| Name: | Deb Spencer |
| E-Mail: | mddscop@sbcglobal.net |
| City/State or Country: | Shelby Twp. |
| Date: | Fri Dec 23 06:01:06 2005 |
| Wrote... Hi Shannon, Happy belated Birthday!!!!!!!!!!!! Hope your birthday was special!! Love, Deb |
|
| Name: | Shannon |
| E-Mail: | kellym678@hotmail.com |
| City/State or Country: | |
| Date: | Thu Dec 22 11:58:49 2005 |
| Wrote... Thank you Cousin for remembering my Birthday. I love you much. |
|
| Name: | Kelly |
| E-Mail: | kellym678@hotmail.com |
| City/State or Country: | Phx AZ |
| Date: | Thu Dec 22 11:57:06 2005 |
| Wrote... Way to go Deb. We are all proud of your hard work and yes "Darryl is an awesome guy". |
|
| Name: | Deb Spencer |
| E-Mail: | mddscop@sbcglobal.net |
| City/State or Country: | Shelby Twp. |
| Date: | Sat Dec 17 14:06:40 2005 |
| Wrote... Hi Kelly and Shannon, Hope everyone has a Blessed Christmas and New Year! Darryl has been training with me at a gym. He has done so much for me!! How do you repay a person like him? The count down is 20 days. I'm getting nervous, excited, and alot of other emotions for Disney!!! It will be great to see you and Shannon on January 7, 2006!! Take Care, Love, Deb |
|
| Name: | a 14 year old |
| E-Mail: | sidekic007@yahoo.com |
| City/State or Country: | muncie indiana |
| Date: | Thu Dec 8 11:48:07 2005 |
| Wrote... i am doing a high school research assignment. my mom has type 2 and my sister and i were diagnosed my mom has tumors in her neck. all i have so far is the cafe ola spots. my sister also has them. she also has exema. i hope i do not get tumors and have to struggle like my mom does. ive heard that the tumors dont sart till about mid 20s so all ican do is hope and pray. |
|
| Name: | candi |
| E-Mail: | sprtsmom2003@wowway.com |
| City/State or Country: | warren michigan |
| Date: | Thu Dec 1 09:51:49 2005 |
| Wrote... I have a 3yo developmental delay and speech delay. I am looking for a summer camp that she can go to for a couple a days. If anyone knows of any please get back to me. Thanks Candi |
|
| Name: | Lorraine Pommier |
| E-Mail: | lj6@telus.net |
| City/State or Country: | Canada |
| Date: | Sun Nov 27 22:47:02 2005 |
| Wrote... I think you are doing a great job. Keep up the good work. With our Love, |
|
| Name: | Jodi Mcgee |
| E-Mail: | libbersmcgee@aol.com |
| City/State or Country: | Ankeny, Ia |
| Date: | Fri Nov 18 13:50:08 2005 |
| Wrote... I love you, Parker. You're a fantastic little boy. You're a pistol, that's for sure. You certainly give your sister a run for her money, for sure. We are all praying for you and mom and Lance. |
|
| Name: | Deb Spencer |
| E-Mail: | mddscop@sbcglobal.net |
| City/State or Country: | Shelby Twp. MI |
| Date: | Mon Nov 14 11:30:06 2005 |
| Wrote... Hi Kelly and Shannon, Just wanted to drop a line to see how everyone is doing. Looking forward in seeing you and Shannon in January. Hope you have a very nice Thanksgiving!!! My prayers are with you always!!!! Take care, Love, Deb |
|
| Name: | Suzanne Earle |
| E-Mail: | ssuzearle@aol.com |
| City/State or Country: | St. Petersburg, FL |
| Date: | Mon Nov 14 10:16:26 2005 |
| Wrote... Great site Darryl! |
|
| Name: | Sami |
| E-Mail: | Sami1939@hotmail.com |
| City/State or Country: | New York - NY |
| Date: | Wed Nov 9 19:36:22 2005 |
| Wrote... Hi Gabbi, I am a wishgrantor who met your father at a fundraiser sponsored by ABCO. Wishing you all the best and enjoy life as much as possible. You are an inspiration to other kids. With affection - hoping to have the priviledge to meet you, Sami |
|
| Name: | Nancy Doak |
| E-Mail: | NRD51@comcast.net |
| City/State or Country: | Albuquerque, NM |
| Date: | Mon Oct 24 19:20:15 2005 |
| Wrote... I just found your web site. I have a daughter who just turned 50 last month. She has NF and is also mentally challenged. She has many hundreds of tumors on the surface and also scoliosis of the spine. She handles it so much better than I could, people stare and make her uncomfortable. The good part is she works in a hospital and the people around her are so kind that it helps. I'm so glad I found your site, it gives me a feeling of comfort to know that we are not alone. |
|
| Name: | Barb Evans |
| E-Mail: | barbiejune5@hotmail.com |
| City/State or Country: | Aurelia, IA |
| Date: | Mon Oct 24 16:35:50 2005 |
| Wrote... Hi Bensen family, just wanted you to know we are thinking of you at this time of your life when it is so upset and you wonder from day to day. We too went though that with our grandaughter Erin. She was also 3 at the time she got sick. She is now 18 and in college. So hang in there and don't ever give up hope. Trust in God and Trust in Gaby's Doctors. Love , Barb |
|
| Name: | Parker's mom |
| E-Mail: | jelmquist@sedgwickcms.com |
| City/State or Country: | Iowa |
| Date: | Fri Oct 21 09:30:24 2005 |
| Wrote... Thanks for creating this site!! I'm interested in finding parents of other children with NF II. My 8 year old son has a cavernous sinus schwannoma(brain tumor) and retinal hamartoma due to NF II. It's taken the vision in his left eye. We have no family history of NF II and I'd never heard of it when he was diagnosed 2 years ago. I feel very helpless just monitoring the tumor growth with MRI's. |
|
| Name: | Katie Dawson (That's Officer Katie Dawson) - remember me now? |
| E-Mail: | KatieJD543@wideopenwest.com |
| City/State or Country: | Chicago, IL |
| Date: | Wed Oct 19 16:38:59 2005 |
| Wrote... Hey Darryl, nice meeting you late after the Chicago marathon. Go to bed and stay out of trouble! I'll see you in PHOENIX '07! Katie |
|
| Name: | Kathy Chambers |
| E-Mail: | jckc50@comcast.net |
| City/State or Country: | Littleton, Colorado, USA |
| Date: | Mon Sep 26 12:50:41 2005 |
| Wrote... My adopted Grandson has multiple birthmarks and his pediatrician warned us of the possibility of neurofibromatosis. I found a little info on this topic, but not much... Can you direct me to where I can find more information on this condition? Thx, Kathy Hi Kathy, I highly recommend Dr. Korf's site: http://www.understandingnf1.org Especially his consultation videos. also I recommend that you check out the other sites that I have listed on my "Related Links" section. Best Regards, Darryl
|
|
| Name: | teresa marsland |
| E-Mail: | marsland68@hotmail.com |
| City/State or Country: | leicester england |
| Date: | Tue Sep 20 15:43:35 2005 |
| Wrote... hello was looking through this beautiful website as i do look through nf1 pages due to my daughter BRITTANII-LOUISE MARIE who is also a sufferer of nf1 she has just turned 5 years old and a little brave star happy and shes a go lucky lovely child as all these angles are on her god bless em thank you for sharing this page with me |
|
| Name: | Angeila Ray |
| E-Mail: | dray1699 a bellsouth.net |
| City/State or Country: | Llawrenceburg TN USA |
| Date: | Mon Sep 19 14:47:44 2005 |
| Wrote... I have a 12year old child with NF1 Jasmine. She also has MoyaMoya;she also has NFtumors on her colon;brain;spin.Her Drs have never seen work this fast before. |
|
| Name: | Theresa Kay |
| E-Mail: | tbkay1@juno.com |
| City/State or Country: | Hesperia, Ca |
| Date: | Mon Sep 12 23:08:11 2005 |
| Wrote... I have fibromas in my left foot that have reocurred. so I am very interested in any inforamation that I can get. |
|
| Name: | Jared Walker |
| E-Mail: | sallywalker_cwcal@hotmail.com |
| City/State or Country: | Salt Lake City |
| Date: | Sun Sep 11 20:41:27 2005 |
| Wrote... Looking for others with NF |
|
| Name: | Tammi Finley |
| E-Mail: | finley2@bellsouth.net |
| City/State or Country: | Eddyville, Ky |
| Date: | Fri Sep 9 17:13:07 2005 |
| Wrote... Amber had her scoliosis test, and looks like she has the very very beginings, but nothing to worry about for a long long while! |
|
| Name: | Vincent Squillace |
| E-Mail: | Mjrleaguermr42@Aol.com |
| City/State or Country: | new york |
| Date: | Wed Sep 6 19:50:47 2005 |
| Wrote... Hey i ran with you on Sunday, you and your wife are amazing people and without your motivation i dont think i would have finished when i did or as strong as i did. You helped me a lot and i just wanted to say thank you so much and i cannot wait until next year's half marathon when i will hopefully see you again. Until then, feel free to e-mail or instant message me. Thanks! Vin |
|
| Name: | Erica |
| E-Mail: | erica.hines@thomson.com |
| City/State or Country: | Mickleton NJ |
| Date: | Mon Aug 29 14:22:05 2005 |
| Wrote... Hello, I am a parent of a child with NF and I know your pain. I also, know when prayers go up, blessings come down! We will find a cure for NF!!!! |
|
| Name: | danielle |
| E-Mail: | dstokes@wi.rr.com |
| City/State or Country: | kenosha wi us |
| Date: | Sun Aug 21 00:39:06 2005 |
| Wrote... my son has nf1 so i can relate.I think it's great what you're doing.We really need to give these kids a chance at a normal life.You have my support and gratitude. danielle stokes |
|
| Name: | Krista |
| E-Mail: | Valen1km@cmich.edu |
| City/State or Country: | Shelby Twp,MI |
| Date: | Tue Aug 16 16:58:10 2005 |
| Wrote... HI Darryl, Sherry, Kelly, Shannon, and the rest of the gang!! I hope you are all doing well and I've been thinking about ya!! Good luck with fundraising and training for the upcomming Chicago marathon!!! :) Krista |
|
| Name: | nikki |
| E-Mail: | oliverandme2000@yahoo.co.uk |
| City/State or Country: | england |
| Date: | Sun Aug 14 14:56:16 2005 |
| Wrote... i my name is nikki im from swindon england i also suffer from nf i wish to say a big thank you and good luck to all those supporting and running in the upcomming marathon my email address is oliverandme2000@yahoo.co.uk i also have yahoo im : uksbuffy if anyone wants to chat |
|
| Name: | Betty Hollowell |
| E-Mail: | sunbrook2001@yahoo.com |
| City/State or Country: | Bedford,Indiana |
| Date: | Thu Aug 11 19:57:10 2005 |
| Wrote... Hi my name is Betty I too have NF and two of my 3 children also have it.It very hard for me to go anywehere because people do stair. there are not many here in town who have it;just myself and 2 brothers.People are so crule. |
|
| Name: | Jim Hubbard |
| E-Mail: | mchubb@sti.net |
| City/State or Country: | Raymond, California |
| Date: | Sun Aug 7 22:00:18 2005 |
| Wrote... Hi Shannon, I am a 50 year old male diagnosed when I was 11. I have had numerous surgeries, but have been "surgery" free for over twenty years. I wish you well. Knowledge is power so find out all you can. Jim |
|
| Name: | Tracie Chene |
| E-Mail: | Chene3@aol.com |
| City/State or Country: | Farmington Hills, MI |
| Date: | Sat Aug 6 18:56:31 2005 |
| Wrote... Hi Shannon. Hope all is well. We miss you and hope to see you soon. Haley and Jolie send their love. Hugs to you and your family. Tracie & Steve |
|
| Name: | Julia Harrision |
| E-Mail: | jharrisonis@rogers.com |
| City/State or Country: | Canada |
| Date: | Wed Aug 3 06:51:01 2005 |
| Wrote... Hi: I am an NF1 patient, 47 year old (F) I have been seeing a dermotologist who has removed these tumours by C02 laser with fairly good results from my perspective. Is there anyone in Canada to your knowledge that does the type of work you do? Are you planning on training any interested Drs. in other countries to perform this technique? thank you. |
|
| Name: | Loni Allen |
| E-Mail: | garyloni@peoplepc.com |
| City/State or Country: | Del Norte Colorado |
| Date: | Tue Aug 2 19:51:52 2005 |
| Wrote... My name is Loni Allen. One week ago my daughter went to our local clinic to have what we thought was a cist removed. The PA sent it in for routine testing. Today he called and said it was a tumor called Neurofibroma. I started trying to find information on this and came across your website. So far I am really confused. The only symptoms my daughter has (had) was this one bump on the back of her head. I have many questions for the doctor tomorrow but if anyone can give me some insight before then I could use it. My biggest question is, since the tumor was found and removed and there have been no other signs or sypmtoms are we okay or do other symptoms keep showing up? I don't know anyone else with this disorder. Please, if anyone can give me some insight I would appreciate it. Dear Loni, I recommend that you review Dr. Bruce Korf's site : http://www.understandingnf1.org & http://www.ctf.org/whoweare/profiles/bkorf.htm to better prepare you for your doctors visit. I think that you will find Dr. Korf's consultation videos very helpful. Please keep us posted, Darryl
|
|
| Name: | kathy williams |
| E-Mail: | ks12160@yahoo.com |
| City/State or Country: | williamson, ga |
| Date: | Sun Jul 31 18:28:26 2005 |
| Wrote... hi, my name is kathy, i have 5 kids and 3 of them have nf. i have nf1 also. my oldest daughter she has seizures and a lot of pressure in her eyes. my youngest daughter has learning disability. and is very small for her age, she had a tumor, disfigure her nose and has 2 operations on it. my youngest son is very small, and has very weak hands he is good in school just his writing skills are poor. i hope they will find a cure so no one else will have to suffer. God bless everyone with nf. |
|
| Name: | kathy williams |
| E-Mail: | ks12160@yahoo.com |
| City/State or Country: | wiilliaMsom , GA |
| Date: | Sun Jul 31 18:20:42 2005 |
| Wrote... MY WISH IS THAT THEY WILL SOON FIND A CUR I HATE THE TUMORS THAT HAVE TAKEN OVER MY BODY , I FEEL LIKE EVERY ONE IS ALWAYS STARING AT ME I HAVE 5 KIDS AND 3 OF THEM HAVE NF. MY OLDEST DAUGHTER HAS SEIZURES . AND ONE LARGE TUMOR ON HER BACK . MY YOUNGEST DAUGHTER HAS A LEARNING DISABILITY |
|
| Name: | debbie brubaker |
| E-Mail: | debbiebrubaker@yahoo.com |
| City/State or Country: | |
| Date: | Thu Jul 21 09:39:41 2005 |
| Wrote... i like this site very much i am glad that i found it. it would be nice to one day find a cure for nf. i have it all over and sometimes wish they would just go away. but anyway just wanted to say how much i like this site. deb brubaker |
|
| Name: | Danya mcGowan |
| E-Mail: | danya3@verizon.net |
| City/State or Country: | PA |
| Date: | Sat Jul 16 18:30:15 2005 |
| Wrote... Much Luck and Hope to your darling daughter. My son was 5 when diagnosed with NF and he is now 11. He also has optic glioma, but also has two different brain tumors as well. He has had chemo twice, and recently went through radiation therapy. He has had 4 major brain surgeries, and had to have a shunt placed in his head to releive pressure due to tumors. His attitude is amazing, like that of your daughters I am sure. We wait for a cure, with hope for a brighter, pain free living for these innocent children. I will pray for your girl, please pray for my boy Martin. |
|
| Name: | Bronwyn Dargaville |
| E-Mail: | dargies@xtra.co.nz |
| City/State or Country: | New Zealand |
| Date: | Wed Jul 13 02:07:44 2005 |
| Wrote... Hi Tara and Preston, Bronwyn from the NF bulleting board here. What a lovely boy, the photo in after the op is heartbreaking I am so glad Preston appears to be making a good recovery. I wish you and your family all the best and that one day medical science will be able to stop NF in its tracks Bronwyn |
|
| Name: | lundi |
| E-Mail: | |
| City/State or Country: | |
| Date: | Wed Jul 6 13:37:06 2005 |
| Wrote... That was awesome you guys made me wanna cry I am so happy he is doing great!!!!!!! |
|
| Name: | jackie |
| E-Mail: | jackiebrom@HOTMAIL.COM |
| City/State or Country: | UK |
| Date: | Wed Jul 6 04:02:57 2005 |
| Wrote... HAVE U ANY PHOTOS OF PLEXIFORM FIBROMAS |
|
| Name: | kathy |
| E-Mail: | ks12160@yahoo.com |
| City/State or Country: | wlliamson ga |
| Date: | Wed Jun 29 15:48:51 2005 |
| Wrote... hi, I HAVE NF TO AND 3 OF MY 5 CHILDREN HAVE IT ALSO. MY WISH IS THAT THERE WILL BE A CURE FOUNDSOON I WISH YOU THE BEST GOD BLESS YOU KATHY |
|
| Name: | Danielle Compton |
| E-Mail: | averyandcadensmom@comcast.net |
| City/State or Country: | Grand Blanc, MI |
| Date: | Mon Jun 27 20:27:55 2005 |
| Wrote... Preston, you sure are such a brave little guy. I wish you and your family and all other NF families healthy healing and happiness always. We are lucky to know your family as our good friends. God Bless you all... |
|
| Name: | Mom |
| E-Mail: | sandwomansix@aol.com |
| City/State or Country: | Michigan |
| Date: | Thu Jun 23 19:02:11 2005 |
| Wrote... As I read these messages I realize that this web site is bringing people together who feel they are alone and have no one to talk to. I know that there are many people with NF who now have made "friends" online to share their fears and problems with. Good job Darryl. |
|
| Name: | Tammi Finley |
| E-Mail: | finley2@bellsouth.net |
| City/State or Country: | Eddyville, Ky |
| Date: | Mon Jun 20 12:53:06 2005 |
| Wrote... HI everyone. All is well here, we really miss the whole " family". The pictures of the fun run were great. I see alot more sponsors this year. Thats awesome! I hope everyone is having a great summer. Keep in touch |
|
| Name: | pam davis |
| E-Mail: | gtdavis@peoplespc.com |
| City/State or Country: | linden In |
| Date: | Sun Jun 12 16:33:16 2005 |
| Wrote... I was reading thru some of the mail our 15 years son has NF,we found out when he was a baby. No one in our families has NF.We feel for everyone who is just finding out that someone they care about has it. Hang in there. A lot has happened in last 14 years.For anyone in Indiana, please let me know what we can do to help you. We are associated with NFINc., and trying hard to ger a group going again. Support of others no matter where in the world they are in important to all of us, We are family. Take care everyone. Pam |
|
| Name: | Nicole |
| E-Mail: | elmquisn@trinity-health.org |
| City/State or Country: | Davison/MI |
| Date: | Thu Jun 9 13:14:57 2005 |
| Wrote... I am so impressed by this website and the photos from this past weekend's marathon. I know Darryl through St. Joseph's (where I am a health educator) and I've been priveleged to work with him over the past 2 months. He introduced me to NF (which surpisingly enough being in the health profession--I had never heard of). I hope they continue to research and find a cure for all with NF. God be with you! |
|
| Name: | rachael |
| E-Mail: | towersrachael@yahoo.com |
| City/State or Country: | cortlandny |
| Date: | Wed Jun 8 08:09:59 2005 |
| Wrote... My Name is Rachael and my mom has neurofibromatosis. she has both types of nf I wish you and your family the best of luck I would like to stay in contact with you please email me at towersrachael@yahoo.com thanks you for your time Rachael |
|
| Name: | Chris |
| E-Mail: | McKayRDM8@aol.com |
| City/State or Country: | Temecula CA |
| Date: | Sun Jun 5 19:00:59 2005 |
| Wrote... Hi Shannon, I am so excited. My family and I just got done doing the Rock N Roll Marathon with Daryl- and we are so excited to be part of the NF Marathon Team! I hope we can meet you some day! We ran for our daughter Carly, and all the NF kids and families! We had the honor of finishing this marathon with Matt- Come visit us at www.caringbridge.org/ca/carlymckay |
|
| Name: | Dana |
| E-Mail: | dana300@bezeqint.net |
| City/State or Country: | Israel |
| Date: | Sat Jun 4 08:38:48 2005 |
| Wrote... Hi shannon, It's been long time since we last were in touch.I've tried to write you over and over again without getting any answer from you till noe. Is eveything o.k with you?. I'm very worried. Please advise.I'm praying for you. Dana |
|
| Name: | Deb Spencer |
| E-Mail: | deb565@sbcglobal.net |
| City/State or Country: | Shelby Twp, MI |
| Date: | Tue May 31 10:16:42 2005 |
| Wrote... Hi Kelly and Shannon, It was an absolute delight to have met the two of you at the "Fun Run" on May 20, 2005, Friday. We had a great day!! I'm looking forward in participating in the Half Marathon in Disney 2006. I'm not a runner, but with help from my trainer, mentor, and good friend, Darryl, I will finish this Marathon for Shannon, who truly is my HERO!!!!!! I'm looking forward in seeing you and your mom on January 7,2006. My prayers are with you and your family!!! Take Care Love, Deb |
|
| Name: | David Tate |
| E-Mail: | wareagle@terraworld.net |
| City/State or Country: | Topeka Kansas |
| Date: | Sat May 28 17:27:07 2005 |
| Wrote... I am 45 years old and have dealt with vonrecking house diease since I was about 8.I have had several surgries through my life.It has been over 10 years since I have had any thing removed.I have the tumours all over my body from head to toe.I also no from experence most tumours come back.Thank You David |
|
| Name: | Tara McFarland |
| E-Mail: | mcfarland_tara@yahoo.com |
| City/State or Country: | MI |
| Date: | Sun May 22 11:52:31 2005 |
| Wrote... Just wanted to say "hi" and thank you for the information that you presented last night. We will be sending you an email with our little "NF Hero's" info very soon! Keep up the good work! We'll be praying for Shannon! |
|
| Name: | Carole |
| E-Mail: | cigi3@aol.com |
| City/State or Country: | Deerfield, MA |
| Date: | Sat May 21 16:47:53 2005 |
| Wrote... I just came across your website and read up a little on your dynamite little girl...what a beautiful smile and beautiful spirit she has. I will keep her in my thoughts and prayers and will talk to my NF angel to make sure he watches over her too. Take care... Carole |
|
| Name: | Julie Wilcox |
| E-Mail: | julie397@comcast.net |
| City/State or Country: | Macomb Township, MI |
| Date: | Tue May 17 19:06:32 2005 |
| Wrote... Every once in a while I just sit here at my computer and check out the updates on this website and never do I sit here without a knot in my throat and a tear in my eye. You are amazing and I just want to tell you that I am honored to become a part of your marathon team and to meet all of these wonderful people. I cannot wait until we can stop running!! GO NF TEAM!! |
|
| Name: | Jenny Quinne |
| E-Mail: | JeniQ703@com cast.net |
| City/State or Country: | New York, New York |
| Date: | Thu May 12 15:13:05 2005 |
| Wrote... Hey! your team looks great, keep up the great work. A cure is in site, I just know it. |
|
| Name: | Meg |
| E-Mail: | megkirpas@hotmail.com |
| City/State or Country: | ma |
| Date: | Tue Apr 26 07:10:36 2005 |
| Wrote... I will pray for shannon |
|
| Name: | stacey |
| E-Mail: | waters_stacey@yahoo.com |
| City/State or Country: | Bryan,Texas |
| Date: | Mon Apr 25 18:44:04 2005 |
| Wrote... I to have nf I know what you go thourgh till a fews ago I did know that it was so common I hope and pray someday we all will be able to find a cure your new friend stacey. |
|
| Name: | Dianne Schweiger |
| E-Mail: | dianneschweiger@aol.com |
| City/State or Country: | Auburn, WASH |
| Date: | Mon Apr 25 00:31:44 2005 |
| Wrote... HELLO my name is DI and IM on top of happiness as my daughters cerebellar tumour was removed fri THANKYOU AND GOD BLESS DR.Ellenbagen and his team doc nurses and any one else who helped saved our daughters life. her name is JASMINE+ THANKS TO EVERYONE FOR THE PRAYERS THANKYOU MUCKELSHOOT SHAKER CHURCH |
|
| Name: | shelia |
| E-Mail: | davis @bell south |
| City/State or Country: | bogslusa |
| Date: | Thu Apr 21 06:44:17 2005 |
| Wrote... Hello Shannon I was just checking in on you to see how things were going with you glad to hear everything is still going good with you will check back in on you later good luck and have a nice day. Shelia |
|
| Name: | Stella Johnson |
| E-Mail: | StellabyStarlgt@aol.com |
| City/State or Country: | |
| Date: | Wed Apr 13 12:41:22 2005 |
| Wrote... I volunteer at Women First Resource Center, and we had a young lady with neuofibromatosis to come in looking for information. We have been trying to help her locate brochures, anyuthing relating to this to help her. If you can direct me to a site, phone number or send me any information you have it would greatly be appreciated. Thank You, Stella |
|
| Name: | Dena |
| E-Mail: | fire21_98@yahoo.com |
| City/State or Country: | canada |
| Date: | Sun Apr 10 19:48:35 2005 |
| Wrote... Hello, I guess I should say a little more about myself,I'm 23 years old I never knew I had NF1 till I had my first son... then I started to get them on my body all over.. I really wish sometimes at my age I could look pretty like all 23 year olds I really finde it hard I really hate showing my self to my boyfriend... sometimes I get really scared that what if he can't stand it anyone... I don't know It really brothers me I would love to have someone to talk to about that has NF1... Thanks for your time dena... |
|
| Name: | Dena |
| E-Mail: | fire21_98@yahoo.com |
| City/State or Country: | Canada |
| Date: | Sun Apr 10 19:39:58 2005 |
| Wrote... Just saying Hi I have Nf1 I never talk to anyone one else who has it I never even knew there was such a thing till I found out I had it I finde it really scary... I get really sad about my self and sometimes wonder why me I spend lots of time thinking about it and crying... I would lovr to chat to someone about it my age.. I'm 23 |
|
| Name: | Heidi LaRou |
| E-Mail: | hlarou@hotmail.com |
| City/State or Country: | Kenmore, NY |
| Date: | Fri Apr 8 07:35:13 2005 |
| Wrote... Hello everyone, my name is Heidi and I've written before. I wonder if anyone out there is experiencing difficulty with their NF1 children suffering from major motor and growth delay. My daughter (age 5) is at least a full head shorter than her peers and it is a source of great anguish for her. |
|
| Name: | Tracy Bowen |
| E-Mail: | tracybowen@ netscape.com |
| City/State or Country: | Bonney Lake, Washington |
| Date: | Wed Apr 6 17:25:39 2005 |
| Wrote... Hello. Just stopping by to see what info you had to offer. I have NF and I have developed a seizure disorder due to a large tumor causing preassure on the left side my brain. Looking for anything that might help. |
|
| Name: | michael |
| E-Mail: | mlechurch@yahoo.com.au |
| City/State or Country: | Australia |
| Date: | Tue Apr 5 22:23:59 2005 |
| Wrote... hi,im 48 and have had nf1 for about 30 years.i have cafe late spots and mutiple tumors some of which i have had removed but more keep raturning.i was diagnosed with a brain tumor 2 years ago.i just wish some one could find a treatment for us |
|
| Name: | suzi |
| E-Mail: | suzi_rees@yahoo.com |
| City/State or Country: | uk |
| Date: | Mon Apr 4 11:25:09 2005 |
| Wrote... i have just been diagnosed with nf2 and i think u r doing such A wonderfull thing to raise money for the cause so god bless you and good luck with everything u do!! xxxxxxxx |
|
| Name: | Tina |
| E-Mail: | Tinalj78@aol.com |
| City/State or Country: | |
| Date: | Wed Mar 30 18:41:09 2005 |
| Wrote... I came acroseed you spot while searching for something else. Just thought I would say Hi and let you know I was here, and say that you will be in my thoughts and prayers... |
|
| Name: | Carra Llerena |
| E-Mail: | tracksleftbehind@hotmail.com |
| City/State or Country: | Miami, FL |
| Date: | Tue Mar 29 06:46:38 2005 |
| Wrote... My son has a cafe au lait spot and I am just researching. Good day! |
|
| Name: | Kendra Thornsberry |
| E-Mail: | klt2005@aol.com |
| City/State or Country: | Waldron, AR |
| Date: | Thu Mar 24 09:19:19 2005 |
| Wrote... I have an uncle who knows what you are going through so you are not alone. I pray for everyone that has this terrible disease and I know one day God will take it away from you. |
|
| Name: | sarah maccallum |
| E-Mail: | derek@freeserve.co.uk |
| City/State or Country: | scotland |
| Date: | Sat Mar 19 17:56:55 2005 |
| Wrote... i am 9 years old i was diagnosed with nf1 3years ago i have aplexiform in my neck which cant be removed my mum had a plexiform tumour on her hip which weighed 14lbs which she had debulked .i hope you are doing well . i have started modern , ballet and tap dancing |
|
| Name: | Jenny |
| E-Mail: | foppes@gtec.com |
| City/State or Country: | Illinois |
| Date: | Tue Mar 15 08:36:45 2005 |
| Wrote... I am a 32 year old Registered Nurse. I am from Illinois. I have NF1. I have a long familial history, my 5 year old son, James has it. At this time, he only has CALS. I did not really have many tumors till I got pregnant with him when I ws 27. Please feel free to write and ask questions either professional or personal. Please put "nf" in the subject line, so that I wont delete with the junk mail. Thanks. God Bless. |
|
| Name: | AMETRA SAUNDERS |
| E-Mail: | CAROLINA.COM@878 |
| City/State or Country: | ORLANDO FL 32819 |
| Date: | Thu Mar 10 08:55:51 2005 |
| Wrote... God loves you |
|
| Name: | Betty Ann |
| E-Mail: | shelby1@tbaytel.net |
| City/State or Country: | Canada |
| Date: | Wed Mar 9 07:08:40 2005 |
| Wrote... I have NF and my tumors are on spine and everywhere else.It's invisible so NO one sees the pain.We need a cure.We need funding!! |
|
| Name: | Liz N. |
| E-Mail: | geckogirl81@hotmail.com |
| City/State or Country: | |
| Date: | Mon Mar 7 12:43:33 2005 |
| Wrote... I was looking up Tentorial Meningiomas and was directed to your site. Thank you for the information. |
|
| Name: | Shelia |
| E-Mail: | davis 709@bell south,net |
| City/State or Country: | Bogalusa La, |
| Date: | Wed Mar 2 18:37:45 2005 |
| Wrote... Hello Shannon JUST THOUGHT I would say hi and to see how things were going we you , I hope things always good we you and I 'll keep you in my prays and thoughts. |
|
| Name: | Kivalina |
| E-Mail: | spyrogirlkim@hotmail.com |
| City/State or Country: | Kansas |
| Date: | Sat Feb 26 22:04:09 2005 |
| Wrote... I have a MRI the 7th.I am a lot older than you so docs dont worry bout me.I may have a brain tumor.I haver 3 kids to raise all girls. I hope you are doing well. |
|
| Name: | Kivalina |
| E-Mail: | spyrogirlkim@hotmail.com |
| City/State or Country: | Kansas |
| Date: | Sat Feb 26 22:00:04 2005 |
| Wrote... I have NF1 and have major trouble walking due to NF tumors on my spine and in my spine.I hope they can find a drug to help us.I would love to try anything so I can walk without pain. |
|
| Name: | Carolyn Bame |
| E-Mail: | harplady2@yahoo.com |
| City/State or Country: | Flagstaff, AZ |
| Date: | Fri Feb 25 00:23:31 2005 |
| Wrote... I'm touched by the site. Read about Shannon in a Healingharps group email requesting someone in Arizona to offer harp lessons for Shannon. I'm here in Flag. Where are you? |
|
| Name: | glenn |
| E-Mail: | glenn@pbgs.net |
| City/State or Country: | mi |
| Date: | Thu Feb 24 16:25:09 2005 |
| Wrote... Hi D hope everything is going well with you! |
|
| Name: | amanda tryan |
| E-Mail: | tamandtryan@yahoo.com |
| City/State or Country: | Gladstone MI |
| Date: | Wed Feb 23 13:39:23 2005 |
| Wrote... hi everyone |
|
| Name: | meg reddekopp |
| E-Mail: | beatleshow@hotmail.com |
| City/State or Country: | saskatoon s.k canada |
| Date: | Wed Feb 23 06:35:25 2005 |
| Wrote... I'm desperately waiting for the drug that will help us with nf1 ld caused by too much ras |
|
| Name: | Lisa Ehrhardt |
| E-Mail: | lehrhardt@ao;.com |
| City/State or Country: | Wauwatoas Wi 53213 |
| Date: | Thu Feb 10 15:37:20 2005 |
| Wrote... Hi I have a very mild case of Nf1 However I did have cancer which is related to nf1 But cancer free now for 18 years. anyone please feel free to e-mail me at the above E-mail Good luck to all of you in the marathon le |
|
| Name: | NDER |
| E-Mail: | NADER_ABOZIED@YAHOO.COM |
| City/State or Country: | EGYPT |
| Date: | Mon Feb 7 13:29:35 2005 |
| Wrote... THANKS FOR SERVICES |
|
| Name: | tom 7 sharon hintze |
| E-Mail: | dthree@cableone.net |
| City/State or Country: | dewey, arizona |
| Date: | Sun Feb 6 16:29:03 2005 |
| Wrote... AWESOME! |
|
| Name: | Mom |
| E-Mail: | sandwomansix@aol.com |
| City/State or Country: | michigan |
| Date: | Thu Feb 3 19:10:58 2005 |
| Wrote... Darryl, the pictures are great! |
|
| Name: | Rachell McCurry |
| E-Mail: | irishblondee373@netscape.net |
| City/State or Country: | Ohio |
| Date: | Mon Jan 31 10:10:23 2005 |
| Wrote... Hi Shannon!! My names Rachell. How are you? I'm doing research for a school project and this is the condition that i decided to research. There are a lot of interesting things about this condition. I'm very glad that your 8 years old now! Happy be-lated Birthday!! :) I hope that you got everything you wanted and more!! You go out and live your life to the fullest no matter what!! Have a WONDERFUL time and just be yourself. People will appreciate you for that!! Nice talking to you!! Bye-Bye!! :) |
|
| Name: | Toni (Gabriela's Mom) |
| E-Mail: | 3krazykidz@optonline.net |
| City/State or Country: | New York |
| Date: | Mon Jan 24 13:33:09 2005 |
| Wrote... Hi Shannon and family, I have to say I admire all of so very much. We found out about Gabbi when she was young, however we were with the wrong doctors and were misled into thinking that there was nothing we could do for her. It was my fault too since I was so overwhelmed and went into stages of anger,depression and denial about it. I am so beyond everything now. My only thought is to help find a cure for all these beautiful children and people with NF. We have been selling the wristbands,setting up fundraisers with the school and my son will be running his first marathon in Virginia Beach this Sept. I am finally coming out! Love your website. It rocks! Especially the NF info and the pictures.Keep up the great work, we all need more people like you. Best Wishes to you all! |
|
| Name: | Gabriela Zafiropoulos |
| E-Mail: | hope4gabbi@yahoo.com |
| City/State or Country: | Holbrook, New York |
| Date: | Mon Jan 24 13:10:45 2005 |
| Wrote... Hi Shannon I have NF too!I am 7 years old but i will be 8 in May.I am having some tumors in my elbow and my back removed on March 14th.I have other tumors in my brain and spine. I just wanted you to know that i am here and we are almost the same age. Maybe we can be penpals or something. My brother made a website for me too. It is hope4gabbi.4t.com. I hope with all my heart that you are ok. Take good care of yourself. Love, Gabbi |
|
| Name: | Amanda Smith |
| E-Mail: | lsas03@peoplepc.com |
| City/State or Country: | Jonesboro,IL |
| Date: | Sun Jan 23 01:11:24 2005 |
| Wrote... My name is Amanda. My 8 month old baby son was dignosed with neurofibromatois 2 months old. Its one of the most terrified thing that did happen. Me and my husband cried and was very upset because we didnt understand why it happened and where it could have came from. My son is experiencing development delays and he has more spots appearing every where on his body. Im a parent thats very worried. Could you give me some advice. I would appreciate it very much. Thank You, Amanda Smith |
|
| Name: | Tammi Finley ( and AMBER! ) |
| E-Mail: | finley2@bellsouth.net |
| City/State or Country: | Eddyville, Ky |
| Date: | Sat Jan 15 17:38:08 2005 |
| Wrote... I just wanted everyone to know how thankful i am for you all running and being there at Disney. Amber and I wish we could of been there! Keep up the good work, and let me know if there is anything I can do from here! They have no programs as of yet, here in Kentucky! |
|
| Name: | Steve Kendra |
| E-Mail: | sakendra@comcast.com |
| City/State or Country: | Sellersville, PA |
| Date: | Fri Jan 14 22:25:28 2005 |
| Wrote... This web site rocks! Nice work! Be the change you want to see in the world!!!! |
|
| Name: | Kelsey |
| E-Mail: | blackdragon667788@hotmail.com |
| City/State or Country: | Britton, MI |
| Date: | Wed Jan 12 12:57:15 2005 |
| Wrote... ...hey I just happened upon this website while researching on NF and the Elephant Man, I have to write a really big research paper on it for my class. It has to have 5 different genres, anyways... I also happen to have Neurofibromatosis (thus why I'm influenced in writing this paper) ... I have NF1 (thankfully I have a very, very mild case of it.. so far (I'm 15) I only have cafe-au-lait marks (some are really big) and from what Dr. Francis Collins said when he saw me when I was a baby... that I had a spotanaeous form of it.. because no one else in my family has it.. anyways.. just thought it'll be cool to sign this thing... choi. |
|
| Name: | Lisa Mace |
| E-Mail: | randrade3@cox.net |
| City/State or Country: | Glendale,AZ |
| Date: | Mon Jan 10 23:09:05 2005 |
| Wrote... Hello, I have a daughter (14) with NF1, August 2003 she had gamma knife surgery on a right tentorial meningioma. It was stable for about a year, but has slightly grown? So we talk to the Doctor again on what we should do? I know I have been going through alot of asking myself WHY? I guess because she is my only child. I just pray everything will be ok and I can be strong for her. God Bless everyone who needs his strenght. |
|
| Name: | Albert F. Casintahan |
| E-Mail: | sweetylhenandbert@msn.com |
| City/State or Country: | So. San Francisco |
| Date: | Sat Jan 8 19:43:01 2005 |
| Wrote... Hi! I am a filipino-american. I am 47 years old and have Nf1. Ive had these since I was in my pre-teens. But had a big lump behind my back as big as a grape fruit. I had this operated already. I had some remove also when I was on my early 30s. Some regrew if not all the fats are remove. But if all are remove but not deep, they wont grow back. Some are still appearing to grow more on my body and face. And it really is hard sometimes to be in public, not when I was a kid when you can still wear short pants or go swimming. Now there are times I would have inferiority complex with strangers. By the way I am married, my wife has a child born from a wedlock. |
|
| Name: | Deb Spencer |
| E-Mail: | mddscop@sbcglobal.net |
| City/State or Country: | Shelby Twp., MI |
| Date: | Wed Jan 5 13:35:16 2005 |
| Wrote... Hi Shannon,Darryl, and the NF Team, My thoughts and prayers are with each and everyone as you run and support NF at Disney World. I wasn't aware of NF until I helped with "Pasta with a Purpose" two years ago with Macomb County Sheriff's Explorers. I am touched by the dedication, determination, and faithfulness that Darryl, his family and his soldiers have to raise awareness and funds for NF. I hope to meet Shannon, Amber and their families someday. Have fun at Disney!!!!!!!!! God's blessings to everyone!!!! Love, Deb |
|
| Name: | Bernice Chene |
| E-Mail: | bchene4@yahoo.com |
| City/State or Country: | Clawson, MI 48017 |
| Date: | Sat Dec 25 17:56:57 2004 |
| Wrote... Hi Shannon, This is Miguel and Maria, your cousins Have a great time in Disney World. We want to go see you in Arizona again, we promise will go soon and please come visit us. Lots of love, Maria and Miguel |
|
| Name: | Kelly Mahoney |
| E-Mail: | kellym678@aol |
| City/State or Country: | Phx. AZ |
| Date: | Thu Dec 23 21:53:30 2004 |
| Wrote... Hello to all, Shannon and I are getting very excited to see everyone in a few weeks!! My daughter Samantha will be running with me while Shannon sleeps in. Thank you so much for all of your HARD work and prayers. We love you all. XXXOOOXXXOOXXXOOOXXXOOOXXXOOOXXXOOOXXXOO |
|
| Name: | Susan Walker |
| E-Mail: | swalk233@yahoo.com |
| City/State or Country: | Ms. |
| Date: | Thu Dec 16 04:20:25 2004 |
| Wrote... I have 2 children that have NF1. They have both had several operations for the tumors.I am so sorry to hear about your little girl. I know how you feel. There is no worry like that of a child. Shannon will be in our prayers. Good luck and God Bless. |
|
| Name: | MARY MCFATTER |
| E-Mail: | SMCFATTER@COX.NET |
| City/State or Country: | TEMPE,ARIZONA |
| Date: | Tue Dec 14 19:15:41 2004 |
| Wrote... I AM 42 YEAR OLD WHO HAS NF1. I PRAY FOR ALL OF YOU. I KNOW IT CAN BE DIFFICULT. GOD BLESS. |
|
| Name: | Allison Walsh |
| E-Mail: | awalsh@nf.org |
| City/State or Country: | NY, NY |
| Date: | Tue Dec 14 08:06:24 2004 |
| Wrote... To Darryl and all the other NF runners: I admire what you are doing more than you can imagine and I'd be honored to run along side you sometime in the near future. For now, Steve & I will do whatever we can to continue to make this program grow. God Bless you Shannon... Can't wait to meet you in Disney! -Allison |
|
| Name: | Ismael Rivera |
| E-Mail: | isriver@comcast.net |
| City/State or Country: | Albuquerque, New Mexico |
| Date: | Mon Dec 13 16:51:17 2004 |
| Wrote... Hello I'm 35 with nf1 as well. I have 2 boys, ages 3 and 9 who also have it. |
|
| Name: | roxanne s green |
| E-Mail: | roxannegreen13@msn.com |
| City/State or Country: | MN |
| Date: | Sun Dec 12 19:44:27 2004 |
| Wrote... I will pray for you! |
|
| Name: | Tammi Finley |
| E-Mail: | finley2@bellsouth.net |
| City/State or Country: | Eddyville, Ky |
| Date: | Sat Dec 11 19:39:12 2004 |
| Wrote... HI shannon, so great to hear how your doing better GREAT NEWS!! Amber and Courtney are settling in good and we are enjoying our new home! We are even closer to you now!! :) I really wish I could do the marathon in janurary. I would love you meet you and your mom. I would love amber to be able to come also! Have a HAPPY HOLIDAY's to you and your family AND ALSO DARRYL you and your whole loving caring family! I dont know how i would of made it thru the last two years with out you and your friends support. Take care! |
|
| Name: | hanna |
| E-Mail: | medan@maaganm.co.il |
| City/State or Country: | Israel |
| Date: | Thu Dec 2 12:45:13 2004 |
| Wrote... I am hoping and praying that there will soon be some drugs to treat NF I am so very afraid that I will look like a monster and there is nothing to do. So far I have quit a lot fibromas on my trunk but none in my face please is there any hope. Dear Hanna, It is true that currently there is no cure for NF but researchers are starting to develop effective treatments. When you have time please check out the article on Electro-desiccation under the "Latest Research" section of this website. I have received numerous emails from NF patients who have been very pleased with their results. The article is titled "Noted Plastic Surgeon Discusses Innovative Treatments for Neurofibromas. There is also a lot of promising NF research being done and that is where we come in. Our NF Marathon team is "pushing" that research by helping to fund studies through our "Race for Research" program. NEVER GIVE UP HOPE HANNA and be assured that we will not walk or run away from this project until it is complete, we will keep pushing the research until a cure is found. |
|
| Name: | Danielle Waldowski |
| E-Mail: | Dwaldowski@comcast.net |
| City/State or Country: | michigan/sterling hgts |
| Date: | Wed Dec 1 19:46:34 2004 |
| Wrote... I have never seen so many people put the ignorance of society today behind them and find time to run to try to help find a miracle for NF. I am one of those people. I have been inspired by many people to get out and do something great for people I haven't even meet (I am still dying to meet them) or a cause that isn't well known to others and run this Disney marathon in January and I can't wait. I think this is one more step to my future of help people. I will always keep Shannon in my prayers and thoughts. I am truly inspired by Darryl. Also, being pushed to do one more mile by our heroes Amber and Shannon. If anyone that is affected by NF can show you that they are able to wake up and not give up day after day then everyone should have the strength to help fight. I can't wait to see you all in Disney. Once again Shannon and every other person that has been affect by NF, you all will be in my prayers! Sincerely, Danielle |
|
| Name: | Shelia |
| E-Mail: | 709 davis@bellsouth |
| City/State or Country: | Bogalusa La |
| Date: | Mon Nov 29 09:29:09 2004 |
| Wrote... Hello Shannon Just thought I would check in and say hello. I'm glad to hear every is going good I like to wish you the best through the holidays. I will be checking back later good luck. |
|
| Name: | phil |
| E-Mail: | helkarlo@helkalo.karoo.co.uk |
| City/State or Country: | england hull east yorksher |
| Date: | Sat Nov 20 17:41:51 2004 |
| Wrote... I have NF and no one really knows about it over here. I went to see some one to get reg desabuld and they said it wood go away it not pernemet |
|
| Name: | Richard Owen |
| E-Mail: | richmayals@aol.com |
| City/State or Country: | UK |
| Date: | Fri Nov 12 03:07:30 2004 |
| Wrote... Hi -I'm 47 and from Wales -I was diagnosed with NF2 two years ago - and I have had bi-lateral acoustic neuromas -one has been surgically removed and the other is being monitored -I am just waiting for my latest scan results. The major problem is dealing with the deafness on one side and terrible tinnitus affecting my good side.It's good to see a site, that one can share with folks who have similar predicaments and hope that technology can progress quickly so that at least my twins can have a good outlook as well as many others. |
|
| Name: | JENNIFER RIGGS |
| E-Mail: | JENNIFER.BRUYNEEL@MACOMBCOUNTYMI.GOV |
| City/State or Country: | RICHMOND,MI USA |
| Date: | Thu Nov 11 14:59:27 2004 |
| Wrote... HI SHANNON!I HOPE ALL IS GOING WELL FOR YOU. I AM WORKING WITH YOUR COUSIN DARRYL TODAY. WE ARE LOOKING AT THE PICTURES FROM LONG BEACH. REMEMBER HOW EXCITING THAT WAS? I PRAY FOR YOU EACH AND EVERY DAY, AND I HOPE TO SEE YOU IN DISNEY. TAKE CARE LITTLE ONE! |
|
| Name: | Jessica Edwards |
| E-Mail: | dse8@comcast.net |
| City/State or Country: | Shelby Twp./ Michigan |
| Date: | Fri Nov 5 22:31:16 2004 |
| Wrote... Hey sweetie, My name is Jessica and I'm 16. I just got done playing euchre for the fundraiser. It was really fun! I'm going to be running in the half marathon for you and others and I'm really excited! I'll be praying for you and your family. I hope that everything goes well and that maybe some time I will be able to meet you. Sincerly, Jessica |
|
| Name: | Evan Bunch |
| E-Mail: | |
| City/State or Country: | Wynne,Arkansas |
| Date: | Fri Nov 5 11:52:46 2004 |
| Wrote... I don't have neurofibromatosis but for all of you do I'll pray for ya'll and God Bless You good luck at the Disney Marathon for Research |
|
| Name: | neil hintze ( shannons cousin ) |
| E-Mail: | blacklabel_sk8r2000@yahoo.com |
| City/State or Country: | Dewey , Arizona |
| Date: | Thu Nov 4 18:24:58 2004 |
| Wrote... Hey,I think its awsome what you do,you are helping alot of people.And you have a really good website,Im doing a research paper on nf and i got a lot of my info from your site.See ya in florida |
|
| Name: | Glenn |
| E-Mail: | glenn@pbgs.net |
| City/State or Country: | mt clemens |
| Date: | Tue Nov 2 14:42:47 2004 |
| Wrote... I hope to see you in Disney 05 Marathon! GO TEAM GO! |
|
| Name: | Maria Siege |
| E-Mail: | ms462@medstudents.com |
| City/State or Country: | |
| Date: | Thu Oct 28 21:22:21 2004 |
| Wrote... Hola amigos, yo tengo neurofibromatosis. Gracias para su sitio web. Yo le deseo bien en todo que usted hace y complace sabe que usted estará en mis oraciones. ¡Manténgase al ritmo de la pelea buenos y Godsped! Maria |
|
| Name: | cathy brown |
| E-Mail: | catherine.brown19@btinternet.com |
| City/State or Country: | |
| Date: | Thu Oct 21 01:57:35 2004 |
| Wrote... i am an nf1 sufferermyself and have two children a boy 5 who seems not to have inherited my nf and a daughter 4mths i am noticing she has a col mark on her tummy i hope all goes well for you you are in my prayers |
|
| Name: | Emma Clarke-Bennetts |
| E-Mail: | 00clarkebennettse@camborne-comm-coll.cornwall.sch.uk |
| City/State or Country: | united kingdom |
| Date: | Wed Oct 20 04:47:58 2004 |
| Wrote... thank you i have nf2 and its nice to know people are helping me withoutme knowing thankyou emma |
|
| Name: | vicki |
| E-Mail: | lil_devilmomma@yahoo.com |
| City/State or Country: | staples |
| Date: | Fri Oct 15 15:54:54 2004 |
| Wrote... i have nf and i would love to join some of the things that they have set up |
|
| Name: | vicki |
| E-Mail: | lil_devilmomma@yahoo.com |
| City/State or Country: | staples minnestota |
| Date: | Fri Oct 15 15:53:06 2004 |
| Wrote... i know how it feels i have nf they told me that i would never make it to the age of six and that i would never have children. i'm now nineteen i have 7 month old twin girls. i'm going blind and that is my only serius problem |
|
| Name: | Chris |
| E-Mail: | uptoolate2@hotmail.com |
| City/State or Country: | Washington/UT |
| Date: | Tue Oct 12 13:11:43 2004 |
| Wrote... My neice Madison hsa NF, I am very interested in the disease and possible cures or treatments. Chris |
|
| Name: | kathy gift |
| E-Mail: | higiftgift@aol.com |
| City/State or Country: | Utah |
| Date: | Tue Oct 12 11:21:42 2004 |
| Wrote... I love what you are doing for Shannon. Our daughter, Madison, 11, has NF1 also. I would love to find a way to get rid of that "helpless" feeling that you talked about. Thanks for all you are doing for kids with NF. It touches my heart and I'm sure many others are touched as well. |
|
| Name: | Kelly |
| E-Mail: | kellym678@aol |
| City/State or Country: | phx/az |
| Date: | Sat Oct 9 18:25:43 2004 |
| Wrote... Shannon is having another MRI and CT this Wednesday 10-13. Thanks for all your prayers. We can't wait to see everyone in Florida. |
|
| Name: | Ken Pommier |
| E-Mail: | bigrooster1963@shaw.ca |
| City/State or Country: | Kelowna British Columbia |
| Date: | Thu Oct 7 05:46:01 2004 |
| Wrote... Hello, my 13 year old son has NF1.He also has a large plexiform in his neck region. He and I operate a support group in Kelowna. We are both runners, I am running a marathon tomorrow, and hope to run on for NF next year Great site bye for now |
|
| Name: | Jenny Foppe |
| E-Mail: | foppes@gtec.com |
| City/State or Country: | Illinois |
| Date: | Sun Oct 3 17:51:41 2004 |
| Wrote... I am a 31 year old RN with a farily mild case of NF1. Since I work so closely with others, I have always been self concious about my apperance and am very intrested in getting info on Surgery to remove the NF tumors. |
|
| Name: | Alison and Eleanor |
| E-Mail: | eltom_6@msn.com |
| City/State or Country: | nottingham |
| Date: | Sat Sep 25 23:39:18 2004 |
| Wrote... I am Alison, my daughter Eleanor(10), and I both have NF1. How do we get to find out about these marathons and fundraising events? The NF counsellor in Nottingham has been made redundant due to lack of funds. We feel iscolated you all look like you are having lots of fun. xx |
|
| Name: | Jordan McVicar |
| E-Mail: | bluesrock99@yahoo.com |
| City/State or Country: | San Antonio, Tx |
| Date: | Thu Sep 23 02:46:24 2004 |
| Wrote... What a wonderful site. I am 22yrs old and am also diagnosed with NF. Fortunately, i have have relatively few complications. I wish Shannon and your family the best, and you will all be in my prayers. Keep up the good work!! |
|
| Name: | Shannon Mahoney |
| E-Mail: | |
| City/State or Country: | Phoenix, Az |
| Date: | Mon Sep 13 04:07:47 2004 |
| Wrote... Hi Lori Misch, I'll watch your dog on the side lines in Florida. Thanks for your support. |
|
| Name: | Julie and Brian Arens |
| E-Mail: | barens@ptcnet.net |
| City/State or Country: | Pierce, Nebraska |
| Date: | Sun Sep 12 21:35:46 2004 |
| Wrote... Darryl, Thank you for sending us these pictures of the marathon race. We had a great time running with you. It was a great experience for us. Julie and Brian Arens |
|
| Name: | Beverly |
| E-Mail: | sandwoman6 |
| City/State or Country: | |
| Date: | Sun Sep 12 02:59:18 2004 |
| Wrote... Great pictures!. Congratulations to Matthew and all the other runners. Thanks for keeping us informed on what is going on.With all the money raised, there will be a cure. Looking forward to Disney in January. |
|
| Name: | GLENN |
| E-Mail: | SOACHMAN@AOL.COM |
| City/State or Country: | |
| Date: | Fri Sep 10 00:25:45 2004 |
| Wrote... GOOD LUCK IN DISNEY |
|
| Name: | bethrose |
| E-Mail: | Rosebud125@aol.com |
| City/State or Country: | Long Beach NY |
| Date: | Thu Aug 12 12:44:16 2004 |
| Wrote... What a beautifully designed board/website!! I'll say a prayer for your daughter...Having a strong support system makes ALL the difference!!! |
|
| Name: | Toya |
| E-Mail: | |
| City/State or Country: | New york |
| Date: | Thu Aug 12 12:02:46 2004 |
| Wrote... Hello |
|
| Name: | Deborah DuBray |
| E-Mail: | Louisianayankee@bellsouth.net |
| City/State or Country: | LaCombe, LA |
| Date: | Sat Aug 7 21:47:05 2004 |
| Wrote... My dear friend's daughter has NF1 and I am trying to learn as much as I can about this disease. |
|
| Name: | jan |
| E-Mail: | PNG111NDNS@aol.com |
| City/State or Country: | Port Neches, texas |
| Date: | Tue Aug 3 22:46:07 2004 |
| Wrote... For anyone looking for more informatin on neurofibromatosis there is a web site http://www.nfinc.org. ***Hi Jan, thank you for signing our guestbook. NFinc is listed on our related links page. Take care.*** |
|
| Name: | Dana |
| E-Mail: | dana20@bezeqint.net |
| City/State or Country: | Tel - Aviv |
| Date: | Mon Aug 2 05:24:06 2004 |
| Wrote... Hi, This is Dana again. I wrote you the note before reading the all story (I just discovered it after words). My disease is quiet agrresive almost like yours.What's keeping me optimistic is that I know that the scietists are working very hard for us and wull never give up until they find a cure. I pray it will happen before it is too late for me. Feel free to write me back if you want too. I wish you the best. Dana |
|
| Name: | Dana Naiditch |
| E-Mail: | dana20@bezeqint.net |
| City/State or Country: | Tel - Aviv |
| Date: | Mon Aug 2 04:52:26 2004 |
| Wrote... Hi, As you can see my name is Dana. I've just found your site and I think it's wonderfull. I suffer from NF too and like me it's estimated that there are about 2000 people who suffer from NF in my country.I hope the manifestation of your disease is easier than mine. I wish you the best. yours, truly Dana. |
|
| Name: | Linda Guziejewski |
| E-Mail: | LGski115@msn.com |
| City/State or Country: | Kearny New Jersey |
| Date: | Wed Jul 28 11:14:32 2004 |
| Wrote... Thank you for a marvelous and informative web site...I am an NFerin addition to being a mom who also lost a 10 year old daughter to NF...Please continue your race for a cure... |
|
| Name: | beth |
| E-Mail: | rosebud125@aol.com |
| City/State or Country: | Long Beach NY |
| Date: | Tue Jul 27 19:28:09 2004 |
| Wrote... What a beautiful website!!!! My prayers are with Shannon!!! I was diagnosed when I was 3 years old..back then it was called Von Recklinghausens!!!!! Since then...I've become a special education high school teacher and earned two master's degrees. Luckily...I've had very few complications!! (knock on wood!) |
|
| Name: | Wanda Hojan |
| E-Mail: | wandzia@shaw.ca |
| City/State or Country: | Burnaby, B.C. |
| Date: | Mon Jul 26 17:58:10 2004 |
| Wrote... all the best to You and Your daughter Shannon. My daughter has a brain tumor , optic nerve glioma and I always look for some new info. Thank you for your site . It's excellent and very helpfull for everybody. Together we can help our children and our loved ones who suffer !!! |
|
| Name: | dawn atherton |
| E-Mail: | harleypuppy@aol.com |
| City/State or Country: | okeechobee, fl |
| Date: | Thu Jul 22 19:34:46 2004 |
| Wrote... please let me know how the surgery went -- i am scheduled in sept after leaving so many doctors hysterical dawn |
|
| Name: | J Little |
| E-Mail: | tedelorme@mts.net |
| City/State or Country: | Winnipeg,Mb |
| Date: | Sun Jul 11 10:06:56 2004 |
| Wrote... Hi. anyone with info or help on nf1,Please contact me.Or anyone in Manitoba.My daughter ,10 yrs old has it. Thanks |
|
| Name: | Kelly |
| E-Mail: | frazzledgal2004@yahoo.com |
| City/State or Country: | Whitecourt, Alberta |
| Date: | Sun Jul 11 00:06:49 2004 |
| Wrote... Great site! |
|
| Name: | shelia |
| E-Mail: | Davis at bell south.com.@ |
| City/State or Country: | Bogalusa La, |
| Date: | Fri Jul 9 21:45:14 2004 |
| Wrote... Hi Thought i would check in on have had a lot going on . Hope every thing is going good with you . |
|
| Name: | torrielhowell |
| E-Mail: | torrielhowell@yahoo.com |
| City/State or Country: | ohio |
| Date: | Fri Jul 9 00:16:38 2004 |
| Wrote... Hi, I also have NF and was inherited the disease from my mother. i know how it feels to have this disease and not being to wear certain things and enjoy life like you want. I found your website to be helpful and your cousin is lucky to have a strong support system . I hope that one day they will find a cure or a treatment for NF. |
|
| Name: | Renee Peete |
| E-Mail: | sunshine7888@aol.com |
| City/State or Country: | Savannah, GA |
| Date: | Mon Jul 5 12:05:29 2004 |
| Wrote... Good for you and making this website, my 20 month old was just diagnosed with Optic Glioma without NF and I have been searching the internet looking for information and ran across your website! |
|
| Name: | NARIM |
| E-Mail: | bajrai007@yahoo.com.sg |
| City/State or Country: | SINGAPORE |
| Date: | Wed Jun 30 11:52:36 2004 |
| Wrote... HI,MAY GOD BLISS U,MY SWEET SHANNON.ALL THE BEST IN WHAT EVER U DO.BE STRONG AND STAY COOL. |
|
| Name: | Lori Misch |
| E-Mail: | lgmisch@yahoo.com |
| City/State or Country: | Richmond, Michigan |
| Date: | Sun Jun 27 22:08:39 2004 |
| Wrote... Hi Shannon, Your cousin Darryl Chene and I were talking about you today. He is trying to talk me into running with him in January. I told him only if I can bring my dog with me. I have a dog named Katie who runs 3 miles with me every day. I hope you have a good day today. :-) |
|
| Name: | Jan Hanks |
| E-Mail: | PNG111NDNS@aol.com |
| City/State or Country: | Beaumont, Texas |
| Date: | Thu Jun 24 00:00:46 2004 |
| Wrote... I am a 34 y/o female and have NF1. I plan to travel to New York this summer and have the Electro-desiccation procedure. Do you have an other information on this topic, such as before and after pictures? |
|
| Name: | DeAnne |
| E-Mail: | deannebesnia@yahoo.com |
| City/State or Country: | |
| Date: | Wed Jun 23 18:50:54 2004 |
| Wrote... What a wonderful lucky girl Shannon is to have so much support. I also have NF and never got that kind of family support to help me. (I wasn't even told I had the disease for 13 years.) Good luck to all of you. |
|
| Name: | Ana Scherb |
| E-Mail: | ascherb@uol.com.br |
| City/State or Country: | Recife |
| Date: | Tue Jun 22 08:02:31 2004 |
| Wrote... I pray for a cure, so that all people with NF, mild or severe cases, will all get the chance to live a better life. They do deserve it. |
|
| Name: | Linda Wilson |
| E-Mail: | LindaW934@yahoo.com |
| City/State or Country: | Orlando, Florida |
| Date: | Thu May 27 19:03:07 2004 |
| Wrote... Hi Darryl, We live really close to Disney. You can be sure that my family and I will be out there to cheer for you and the rest of the NF Marathon Team. We're looking forward to meeting you. Keep up the great work! Linda (my son Michael has NF, my daughter Katie does not) |
|
| Name: | sarah |
| E-Mail: | |
| City/State or Country: | |
| Date: | Sat May 15 11:42:28 2004 |
| Wrote... Hi I have nf1 |
|
| Name: | karen williams |
| E-Mail: | craftykaren@frontiernet.net |
| City/State or Country: | wurtsboro ny |
| Date: | Wed Apr 28 18:32:51 2004 |
| Wrote... I want to thank you so much for your article on electro desication, I showed this to Dr Cheverliar in Middletown NY and he contacted you for some more information I am going to have the first treatment on May 4th . My sister Victoria kuhns will be seeing you tomorrow Thursday the 29th for the same thing I sure hope your treatment will help us live the rest of our lives being able to put on a bathing suit just once!!Thank You Karen Williams |
|
| Name: | Bruce Savard |
| E-Mail: | cybercat@surfinonline.com |
| City/State or Country: | Winnemucca ,Nevada |
| Date: | Tue Apr 20 23:02:41 2004 |
| Wrote... I have nf in my back and neck and tne pain just seems go on but I have a good friend that help me for about 17 year's now she has all most lost me 3 time's I guess I'm like the litte bunye I just keep gooing well have a goog hope that we find some thing for this I have for 49 year's |
|
| Name: | zach |
| E-Mail: | |
| City/State or Country: | fond du lac, WI 54935 |
| Date: | Tue Apr 20 13:19:37 2004 |
| Wrote... I wish your daughter the best |
|
| Name: | maria c terga |
| E-Mail: | maricusa@fltitle.com |
| City/State or Country: | pembroke pines, florida |
| Date: | Mon Apr 19 14:47:24 2004 |
| Wrote... Hi again Darryl, I really admire your dedication on this matter. Please e-mail me with information on the marathon on January of 2005, I am completley out of shape, but I would like to participate somehow. Thanks maria |
|
| Name: | maria c. terga |
| E-Mail: | maricusa@fltitle.com |
| City/State or Country: | pembroke pines, florida |
| Date: | Mon Apr 19 14:25:05 2004 |
| Wrote... Hi, This is a mother of one of the many children with neurofibromatosis, Christopher is 16yrs old and was diagnouse with the nf desorder 2yrs ago. He is going to have surgery of one of his eyes,to help him with his double vision due to a tumor on the optical nerve, he also have one tumor on his cervical, this one we have to monitor every 6month with mri's to check on the growth since it can paralyse him if starts grwoing.May God help us all with this terrible illness.Blessings, maria |
|
| Name: | Debbie Zender |
| E-Mail: | dootz@iname.com |
| City/State or Country: | Largo, FL |
| Date: | Sat Apr 10 21:03:40 2004 |
| Wrote... Hello, My nephew has an appointment on Apr. 20th , 2004 at The Children's Memorial Hospital The Neurofibromatosis Clinic in Chicago Illinois. He is 21 months old and has a dozen or more cafe-au-lait spots that weren't there at birth. Some are minute while others are bigger than a half dollar coin. He also has some under his arms and in the groin area. His head is larger than normal and his rib cage is extreamly large. Other than that we don't notice any other symptoms. Neither side of the family has ever had this but his pediatrician wants him checked out. He is very bright for his age. No noticiable delays, other than not walking till he was 15 months which isn't abnormal. I was wondering if you know of anywhere on the web where we can find out more about syptoms? All we find about bones are bow legged, scoliosis or shins, which he has none of those, but his rib cage is huge...looks normal but larger than my 8 and 0 year olds..thank you for your web site.. debbie zender |
|
| Name: | roxanne huron |
| E-Mail: | roxie1642@netscape.net |
| City/State or Country: | san antonio texas |
| Date: | Tue Mar 30 13:42:11 2004 |
| Wrote... i am 19 yrs old and have NF1. My 2 younger brothers, mom, and one of my uncles have NF1. i would like to get involved in any research/studies/ contributions, etc. that there is here in my city. |
|
| Name: | Katie Williams |
| E-Mail: | Williamskl2000@yahoo.com |
| City/State or Country: | Weatherford, Texas |
| Date: | Fri Mar 26 23:54:34 2004 |
| Wrote... I am 24 and ihave NF 1 and i have a shunt also |
|
| Name: | Brittany Terry |
| E-Mail: | bterry56@sprintpcs.com |
| City/State or Country: | Conley GA |
| Date: | Fri Mar 19 10:58:30 2004 |
| Wrote... Hi my name is Brittany. I was looking on the internet to find more information abouy NF. My liitle sister suffers with this disorder and has lived with it for 7 years. She has tumors in the throat and in her ear. The tumors in har body have remained the same size for the last 7 years but she still has some pain in her ear. She also has a trache in her neck to help her breathe because the tumors are blocking her airway. She is a very loving child who enjoys life. I hope that one day we find a cure for for this disease so that we can save more lives and take the pain away from people who suffers with desease. |
|
| Name: | Tammi |
| E-Mail: | finley2@comcast.net |
| City/State or Country: | Warren, Mi |
| Date: | Thu Mar 11 16:44:54 2004 |
| Wrote... Hi Kelly, How are you and your family? Darryl! OMG Thank you so much for posting them pictures of the girls drawings! |
|
| Name: | Kimberly Bach |
| E-Mail: | tanbymist@comcst.ney |
| City/State or Country: | Broomfield,CO |
| Date: | Thu Mar 11 12:16:02 2004 |
| Wrote... My Son Conner who is now 5 has NF1 he has 2 tumors in his neck and several mass size ones in his brain and a plexiform in his chest and finger. We need all the support we can get.... |
|
| Name: | Ornelas Patricia |
| E-Mail: | ornelaspatricia@hotmail.com |
| City/State or Country: | Calexico |
| Date: | Fri Mar 5 16:18:49 2004 |
| Wrote... I have a 4 year old daughter with NF1 please write me about your family and how she was diagnoise with NF |
|
| Name: | Nikole Benson |
| E-Mail: | eleteach03@yahoo.com |
| City/State or Country: | Big Rapids, Michigan |
| Date: | Thu Mar 4 11:41:32 2004 |
| Wrote... I have four children 7yr Breanna, 5yr Kristian who is autistic and Epileptic, 3yr Tiarra who has NF1, and 2yr Zachariah. I also have NF1. nikki |
|
| Name: | Kelly |
| E-Mail: | |
| City/State or Country: | Phx., Az |
| Date: | Thu Mar 4 10:51:18 2004 |
| Wrote... Hello, I am thankful for you Darryl, Your strength and determination are a blessing and motivation. Hello, Tammi, glad to here Amber is doing MUCH better:) |
|
| Name: | John |
| E-Mail: | Bighoss147@yahoo.com |
| City/State or Country: | CT |
| Date: | Mon Mar 1 15:44:08 2004 |
| Wrote... I'm putting together a report for my honors bio class on Neurofibromatosis and I'd just like to thank you fo the information. |
|
| Name: | noreen steenson |
| E-Mail: | noreennf129@hotmail.com |
| City/State or Country: | belfast |
| Date: | Sun Feb 22 13:41:49 2004 |
| Wrote... looking for local support group with anyone with neurofibromatosis |
|
| Name: | Fran Wyrsch |
| E-Mail: | franniefran123@charter.com |
| City/State or Country: | Bethalto IL |
| Date: | Sun Feb 22 13:09:01 2004 |
| Wrote... I was on the internet always searching for news about NF and I came to your web sight for your daughter she is very brave I also have NF-1 My daughter who will be 6 has NF also She was treated for a Optic Pathway Glioma with chemo I pray that some day they will find a cure God Bless Fran Wyrsch And Allie |
|
| Name: | Josh Meyer |
| E-Mail: | JMeyer626@domtar.net |
| City/State or Country: | Arkansas |
| Date: | Sun Feb 22 08:22:38 2004 |
| Wrote... I am looking forward to Disney! See you there. Josh |
|
| Name: | Katie Lange |
| E-Mail: | Katielange@sbcglobal.net |
| City/State or Country: | Dallas, Tx |
| Date: | Thu Feb 19 13:01:23 2004 |
| Wrote... Your website is an inspiration. My 6 year old son was just diagnosed with NF and my husband and I are learning all we can. Thank you for your information and encouragement. |
|
| Name: | Mikki L |
| E-Mail: | mousemml@yahoo.com |
| City/State or Country: | north florida |
| Date: | Thu Feb 19 00:24:11 2004 |
| Wrote... Thank you for this site. I just found it and it is wonderful! My niece just had her first aggressive surgery. I would love to be involoved in the Walt Disney NF marathon in 2005- could you please email me some information when you have time. Thank you! Mikki |
|
| Name: | Tammi |
| E-Mail: | finley2@comcast.net |
| City/State or Country: | Warren, Mi |
| Date: | Sun Feb 15 14:05:37 2004 |
| Wrote... Hi Shannon and family, This is Amber's mom Hope all is well with you. Amber is finally doing good and she is doing good in school. I have heard you are doing ok. Have a good weekend |
|
| Name: | jonathan bunce |
| E-Mail: | mr_goodguy21@yahoo.com |
| City/State or Country: | woodstock IL |
| Date: | Wed Feb 11 08:48:30 2004 |
| Wrote... i am 20 yrs old with Nf 1 i would like to join the marathon but i can't seem to find a support group where i live if u could help me please e-mail me the info so i could join the marathon |
|
| Name: | Bob Skold Jr. |
| E-Mail: | BSkoldjr@aol.com |
| City/State or Country: | Denver, Colorado |
| Date: | Thu Feb 5 09:22:21 2004 |
| Wrote... Hi Darryl, Inspiring and well-done! Way-to-go!! Steve Kendra says you have you act together; I wholeheartedly concur. My next NF Marathon is in Oct. '04 at Dublin Ireland. I have NF 2 . . . can't hear but can run. Grace and peace to you, RES Jr. (under 4 and over 10 club) |
|
| Name: | Kraig Behamburg |
| E-Mail: | kbeham@msn.com |
| City/State or Country: | Ohio |
| Date: | Thu Feb 5 08:16:50 2004 |
| Wrote... I am looking forward to the Disney Marathon Jan 9th, 2005. Hope to see you all there!!!!!! |
|
| Name: | Deborah J. Markle |
| E-Mail: | samskids@enter.net |
| City/State or Country: | Phillipsburg, NJ |
| Date: | Wed Jan 28 18:25:20 2004 |
| Wrote... I am a physical therapist working with a 4 yr. old boy with neurofibromatosis. His legs are very weak and his gross motor skills are only at the 18 month level. Is this normally found with NF? |
|
| Name: | BRAGINA PARKER,ARMON DIGGS AND ANITA DIGGS- BARKER |
| E-Mail: | KNEMANDO@AOL.COM |
| City/State or Country: | DES MONIES,IA |
| Date: | Wed Jan 21 14:03:44 2004 |
| Wrote... HEY I JUST HAVE YOU IN MY PRAYS. I KNOW WHAT YOUR GOING THOUGH. MY KIDS AND MYSELF BOTH ALSO HAVE NF MY SON REALLY HAS IT BAD HE HAS SEVERE HEADACHES THEY DID A MRI AND FOUND 20 OR MORE SPOTS IN HIS HEAD HE'S HAD SEVERAL MRI, AND CAT SCANS NOW HES ALSO HAS SEZIURES AND PASSES OUT ALL TIME HER IN IOWA THE GOV MADE MARCH OR MAY WARENESS MONTH FOR PEOPLE WITH NF BUT MAY GOD BLESS YOU. |
|
| Name: | Darlene Rudi |
| E-Mail: | Darru586@aol.com |
| City/State or Country: | Harrison Twp., Mi |
| Date: | Sat Jan 17 13:27:53 2004 |
| Wrote... Your web site is very nice. You've been busy. I hope all is going well. |
|
| Name: | Emil Neagu |
| E-Mail: | emilneagu2001@yahoo.com |
| City/State or Country: | Bucharest |
| Date: | Wed Jan 14 06:25:03 2004 |
| Wrote... HI!THANK YOU FOR ALL YOUR WORK! |
|
| Name: | Amy Williams |
| E-Mail: | amylyn15@yahoo.com |
| City/State or Country: | San Santonio, TX |
| Date: | Fri Jan 9 11:27:48 2004 |
| Wrote... I think that what your are doing for these kids is great so just keep it up |
|
| Name: | Brittney Fifer |
| E-Mail: | baby_doll_britt@lycos.cpm |
| City/State or Country: | Clover, VA |
| Date: | Thu Dec 18 21:08:59 2003 |
| Wrote... Hey it is me Brittney. My reseach paper is coming along fine and it is due 12/19/03. So far my teacher says that it is really good considering that i could not find that much info on it. Your websites helped alot thank you so much. My brother is fine every day I fear the worse after reading some personal stories of the web. I pray to God and know that he will be fine. May I please have your address and I will send you a copy of my paper. I got to go and finish my paper. Bye May God Bless you and Shannon. |
|
| Name: | Melinda French |
| E-Mail: | melphines@excite.com |
| City/State or Country: | Brooklyn, NY |
| Date: | Thu Dec 18 15:32:00 2003 |
| Wrote... Hello Darryl, This is Melinda from the NNFF Marathon Team Program. As promised, I'm sending you my contact information in order for you to place me on your contact lists. Please do continue the good work you are doing for NF and moreso, for Shannon. :) Greetings, Melinda. |
|
| Name: | Brittney Fifer |
| E-Mail: | baby_doll_britt@lycos.com |
| City/State or Country: | Clover,Va. |
| Date: | Tue Dec 9 11:27:01 2003 |
| Wrote... Hi i wish you luck with your daughter. My brother also has this disorder. He is 17 now. His name is Wes. He does not have any tumors right now but they keep a lookout on it. My mom died of this disorder, of cancer, even though it is very rare for someone to die due to this. Well I hope that God does many mircles for you and your family. -Brittney Fifer |
|
| Name: | margie magdaleno |
| E-Mail: | MSMARG03AOL.COM |
| City/State or Country: | DIAMONDBAR,CALIF |
| Date: | Fri Nov 28 21:44:19 2003 |
| Wrote... I AM 41 WITH NF1 I ALSO HAVE 2 SONS WUTH NF1 AGES 6 AND 15 MY PRAYERS ARE WITH SHANNON SHE IS A VERY PRETTY GIRL GOD BLESS HER AND YOUR FAMILY |
|
| Name: | noreen steenson |
| E-Mail: | noreensteenson19742003@yohoo.co.uk |
| City/State or Country: | belfast |
| Date: | Sat Nov 22 10:48:03 2003 |
| Wrote... i think the photos r lovely please stay in touch about shannon i would like to know about how she is doing my name is noreen iam 29 i have nf1 |
|
| Name: | Melissa Grodhaus |
| E-Mail: | mgrodhaus@neo.rr.com |
| City/State or Country: | winona ohio |
| Date: | Sat Nov 22 08:47:41 2003 |
| Wrote... Nice web site. Melissa 36 nf1. son 13 NF1 and daughter 7 nf1, daughter 5 NF! free so far. |
|
| Name: | shelia |
| E-Mail: | scrappy@hunt brothers |
| City/State or Country: | Bogalusa La, |
| Date: | Fri Nov 21 19:34:02 2003 |
| Wrote... Hello Just thought i would check on you to see .How things are going and hope you enjoy the holidays. Good Luck ! Shelia |
|
| Name: | shelia |
| E-Mail: | scrappy@hunt brothers |
| City/State or Country: | Bogalusa La, |
| Date: | Fri Nov 21 19:33:53 2003 |
| Wrote... Hello Just thought i would check on you to see .How things are going and hope you enjoy the holidays. Good Luck ! Shelia |
|
| Name: | Tom Hill |
| E-Mail: | AlbanyQB10@aol.com |
| City/State or Country: | Albany, TX |
| Date: | Thu Nov 20 11:41:38 2003 |
| Wrote... Good luck |
|
| Name: | skye sanger |
| E-Mail: | skyebunny77@earthlink.net |
| City/State or Country: | Inglis, Florida |
| Date: | Mon Nov 17 08:14:33 2003 |
| Wrote... Im glad your daughter is doing well. Im concerned about my daughter. She has several cafe au lait birthmarks, and developmental delay. She was diagnosed with Autism but Im not sure that is the right diagnosis. Her Dr. doesnt seem to worried about it but its driving me crazy wondering if she has NF. She is 5. She has had an MRI and it came back normal. |
|
| Name: | noreen steenson |
| E-Mail: | noreensteenson19742003@yohoo.co.uk |
| City/State or Country: | belfast |
| Date: | Sun Nov 16 14:46:32 2003 |
| Wrote... is there any treatment for nf |
|
| Name: | tammy dye |
| E-Mail: | thedyefamily6@yahoo.com |
| City/State or Country: | lebanon, ohio |
| Date: | Thu Oct 30 18:19:13 2003 |
| Wrote... need to find out more info regarding optic glioma tumers and their relation to nf1....my father has this ..i have nf as does my sister..i have 4 children 3 of which also has nf.. |
|
| Name: | Tammi Finley |
| E-Mail: | finley2@comcast.net |
| City/State or Country: | Mi |
| Date: | Sun Oct 26 06:28:50 2003 |
| Wrote... You guys all looked great. And shannon is getting so big. I cant wait to meet her one day! Amber is getting along just fine and healing quickly. |
|
| Name: | Rose Ann Fisher |
| E-Mail: | quietirishrose@msn.com |
| City/State or Country: | 28 Adams Drive Stony Point N.Y 10980 |
| Date: | Sat Oct 25 15:37:03 2003 |
| Wrote... Hi! I was very interested in the article about Dr.Weinberg's method of Electro-sesiccation for the removal of neurofibromas. |
|
| Name: | Bruno Rebouças Tamassia |
| E-Mail: | presidente@nf.org.br |
| City/State or Country: | São Paulo |
| Date: | Thu Oct 16 09:37:20 2003 |
| Wrote... Great web site ! We are working in Brazil to find a cure too ! My name is Bruno and I have NF2 and 26 year old. I am the president of the Associação de Neurofibromatose (www.nf.org.br) and I would like to keep in touch. God Bless you, Bruno |
|
| Name: | Shelia |
| E-Mail: | scrappy @hunt brothers |
| City/State or Country: | Bogalusa La. |
| Date: | Wed Oct 15 18:45:52 2003 |
| Wrote... Hi Just thought i would check to see how things were going. And how things went in the race that you were in .And to get and see if there is any change in things .I hope and pray that one day they will find a cure and be able to treat a person with NF as always my prays and thoughts are with you .Shelia |
|
| Name: | April Simmons |
| E-Mail: | apr_de_sim@msn.com |
| City/State or Country: | Jackson , Ms |
| Date: | Mon Oct 13 18:06:39 2003 |
| Wrote... I enjoyed visiting this site. I am a 31 year old felmale with nf1. My child has nf1 also. I will be praying for Shannon. Keep giving out this encouraging message. God bless you April |
|
| Name: | Kaycee |
| E-Mail: | tami1614@charter.met |
| City/State or Country: | Madison, Wi. 53704 |
| Date: | Thu Oct 9 17:08:01 2003 |
| Wrote... I know what its like to nf I also have nf. I found out I had nf at the age of 13 and it was hard to execpt. iI just want to tell you thay my prayers are with you all who have nf |
|
| Name: | Ryan |
| E-Mail: | morisonrp@s-cheshire.ac.uk |
| City/State or Country: | united kingdom |
| Date: | Wed Oct 1 05:55:44 2003 |
| Wrote... I would just like to say hi and one littel phrase that helps me a bit "Sing as if no one were listening, dance like no one is watching, and live every single day as if it were your last t is " even yho it may no be |
|
| Name: | Susan Cagle |
| E-Mail: | jsmk23@aol.com |
| City/State or Country: | Springfield,IL |
| Date: | Sat Sep 27 16:42:13 2003 |
| Wrote... I was also had a life threating disease at age 12 yrs. God bless |
|
| Name: | Shelia |
| E-Mail: | Scrappy @Huntbrothers.com |
| City/State or Country: | Bogalusa La. |
| Date: | Fri Sep 26 12:58:44 2003 |
| Wrote... Hi Was glad to hear from you with will pulling for your team to win the race .And i hope and pray that Shannon MRI comes back good. My prays are with you. Shelia |
|
| Name: | Shelia Cameron |
| E-Mail: | Scrappy @Hunt brothers.com |
| City/State or Country: | Bogalusa La. |
| Date: | Mon Sep 22 15:03:00 2003 |
| Wrote... Hi Just thought I would let you i was thinking about you and wandering how you were doing and to let my prayers are with you Shelia |
|
| Name: | MARCIA |
| E-Mail: | Marcia517@hotmail.com |
| City/State or Country: | Portugal |
| Date: | Mon Sep 22 14:12:48 2003 |
| Wrote... I am from Florida, but my husband is stationed here in Portugal. I myself have neurofibromatosis. I enjoyed looking at your web site. Wish you well and hope that God will send many blessing. Marcia, |
|
| Name: | jUSTINA bRODERICK |
| E-Mail: | justy75@yahoo.com |
| City/State or Country: | Fl |
| Date: | Fri Sep 19 14:48:53 2003 |
| Wrote... I two have NF and have been fortunate i am 28 i pray for you ... love always justy |
|
| Name: | lyndon |
| E-Mail: | lyndon_canada@hotmail.com |
| City/State or Country: | edmonton,alberta |
| Date: | Thu Sep 18 14:25:36 2003 |
| Wrote... i have nf1 good luck to get a cure for nf |
|
| Name: | Alicia |
| E-Mail: | lilsk8erchic2686@aol.com |
| City/State or Country: | Ohio |
| Date: | Sun Sep 14 05:06:06 2003 |
| Wrote... I support all the people with NF. Mainly because i know how they feel. I was born with 2 tumors, and those brown spots. One tumor is on my nose and the other on my tounge. I have a mass of it under my chin but its not noticable. And i hae some freckling under my left arm pit. So i support all those with it. |
|
| Name: | Angela Ramsey |
| E-Mail: | |
| City/State or Country: | |
| Date: | Thu Sep 4 11:13:33 2003 |
| Wrote... i was very moved about your cousin. My daughter has just been diagnosed with NF, i am so glad that your are bringing about awarness of this diliberating disease. I wish you and your family luck and streanght |
|
| Name: | Kelly M |
| E-Mail: | kellym678@aol.com |
| City/State or Country: | HOT AZ |
| Date: | Wed Sep 3 04:07:24 2003 |
| Wrote... Thank you cousin for the great Birthday present. Nothing is better than a cure and your continued fund raising has to making a difference. WE ALL THANK YOU! |
|
| Name: | bambi |
| E-Mail: | |
| City/State or Country: | ankeny,iowa |
| Date: | Mon Aug 25 18:58:49 2003 |
| Wrote... My fiance has NF1 but knows little about it. I have been researching and have become concerned cuz he is getting more and more bumps. we want to start a family so this is a concern as well. we are very scared. |
|
| Name: | Julie Hixson |
| E-Mail: | julie397@comcast.net |
| City/State or Country: | Dearborn, MI |
| Date: | Sun Aug 17 07:01:28 2003 |
| Wrote... DARRYL - Hello! It's Julie! Keep up the good work....it was great to see you the other day running, you're looking good! Keep up the good work...and keep running!! I read the last update on Shannon!!! Great to hear that she is doing well....she'll always be in my prayers! :) |
|
| Name: | Erin De More |
| E-Mail: | chocolatelabus@yahoo.com |
| City/State or Country: | Pittsfield, PA |
| Date: | Tue Jul 15 15:08:35 2003 |
| Wrote... Hi Darryl, I just wanted to leave a message here and let you know that I think you're doing a wonderful thing to help raise awareness for NF. When I first heard about NF, I got on the internet and read everything that I could find about it. It made me angry to see that hardly anyone had heard about NF when it's such a terrible disease. I'm sorry that your cousin has to suffer with NF when she's so young but she's a brave little girl. I pray every day that a cure for NF will be found some day. |
|
| Name: | emma nelson |
| E-Mail: | emmavnelsonathotmail.com |
| City/State or Country: | st albans |
| Date: | Sat Jul 12 06:29:42 2003 |
| Wrote... hello ý have nf1 one too and have large lump on lei respect you that you are do this thanks u ! |
|
| Name: | Lisa |
| E-Mail: | maxwellmom2000@aol.com |
| City/State or Country: | Newbury Park Ca |
| Date: | Sat Jul 12 01:15:10 2003 |
| Wrote... You and your family are in my prayers.. I am adult who has NF1 my family and I have made a donation to the Nf Foundation. together we can find a cure.. I hope all goes well for you and your family.... and agail you are in our prayers |
|
| Name: | Connie Carson |
| E-Mail: | CCarson@emhc.org |
| City/State or Country: | |
| Date: | Fri Jul 11 19:49:57 2003 |
| Wrote... Your sight was very helpful. With lots of information for me to read. Thank You I will keep Shannon in my prays |
|
| Name: | Chris Dingeman |
| E-Mail: | cesd@wideopenwest.com |
| City/State or Country: | Shelby Township, Michigan |
| Date: | Mon Jul 7 22:41:33 2003 |
| Wrote... Hi! |
|
| Name: | laura |
| E-Mail: | whosthatgirl@comcast.net |
| City/State or Country: | macomb/michigan |
| Date: | Mon Jun 30 02:15:37 2003 |
| Wrote... im considering supporting you and your mission with the california marathon! you have amazing dedication. |
|
| Name: | Gaby |
| E-Mail: | hope4thecure@hotmail.com |
| City/State or Country: | St Thomas |
| Date: | Tue Jun 24 02:54:23 2003 |
| Wrote... What an amazing tribute to your niece. Keep up the great work!!!!! I have an 8 year old son with NF and hope and pray that we can find the cure soon! |
|
| Name: | giraffe_baby ( amber's mom ) |
| E-Mail: | finley2@comcast.net |
| City/State or Country: | Warren, mi |
| Date: | Mon Jun 23 16:41:42 2003 |
| Wrote... Hi kelly, and Shannon.. I hope all is well with you guys. I think of you daily. I havent seen any updates, so i hope that Shannon is taking the summer off like we are ! Amber has her next surgery in 7 weeks :( but we will have fun till then! EMail me !!! Tammi |
|
| Name: | bev |
| E-Mail: | sandwomansix@aol.com |
| City/State or Country: | |
| Date: | Sat Jun 21 14:53:16 2003 |
| Wrote... i enjoyed viewing the pictures of the fun run for nf at peace lutheran school.you are doing a great job of bring this to the public. |
|
| Name: | carol |
| E-Mail: | cbrady37@yahoo.com |
| City/State or Country: | mansfield ohio |
| Date: | Thu Jun 19 21:20:47 2003 |
| Wrote... I have NF1 Im still dont know to much about it and Im trying to fine out more about it |
|
| Name: | courtney |
| E-Mail: | cmblandford@enorthhampton.com |
| City/State or Country: | Fernandina Beach, Fl |
| Date: | Wed Jun 18 14:25:24 2003 |
| Wrote... Great job with the website. Good luck. |
|
| Name: | Shannon's mom |
| E-Mail: | kellym678@aol.com |
| City/State or Country: | Phx., Az |
| Date: | Mon Jun 16 04:44:18 2003 |
| Wrote... Dear Pauline-Thank you for your prayers. It REALLY makes a difference. God bless you too! |
|
| Name: | Pauline |
| E-Mail: | field_hockeybaby1@yahoo.com |
| City/State or Country: | Heath |
| Date: | Tue Jun 3 02:00:02 2003 |
| Wrote... To the family of Shannon- hello i would just like to let you know that shannon and her family will always be in my prayers. Just last year i was diagnosed with NF1 but it is not as sevre as hers. Love and Prayers to all of you ~Pauline |
|
| Name: | Matthew |
| E-Mail: | 3murf@comcast.net |
| City/State or Country: | St. Clair Shores |
| Date: | Fri May 30 13:32:01 2003 |
| Wrote... Darryl, To often people such as myself sit back and say I can't. Totally overwhelmed by the enormity of a given situation. Thank you for reminding us that even huge dilemas are just a series of small problems piled on top on one another. We can!! chip away at this disease one person at a time. Imagine how much we could accomplish if the world was filled with people willing to try. Thanks again for awaking in me and others that I can attitude. |
|
| Name: | Rosetta Hood |
| E-Mail: | mspooh@cpol.net |
| City/State or Country: | Pittsburg Ks |
| Date: | Thu May 29 05:41:28 2003 |
| Wrote... My son was just dianosed with NF1, I am looking for all the infor I can find on NF. |
|
| Name: | theresa canterbury |
| E-Mail: | puck1954@hotmail.com |
| City/State or Country: | box 1388, oceana wv 24870 |
| Date: | Tue May 27 15:21:13 2003 |
| Wrote... I also have NF1. take care of yourself little pricess things will be alright |
|
| Name: | BARBARA DERR |
| E-Mail: | derr102560@yahoo.com |
| City/State or Country: | UKIAH CALIF |
| Date: | Fri May 16 02:37:15 2003 |
| Wrote... hello very sorry to hear about your daughter I have nf myself I am 42 years old. I hope she is OK will take care and I will be praised for her.Barbara |
|
| Name: | Skye McIlwraith |
| E-Mail: | skyemcilwraithau@yahoo.com.au |
| City/State or Country: | Sydney, NSW |
| Date: | Wed May 14 04:38:09 2003 |
| Wrote... I have NF1.. I just found this site while looking for advise on taking the pill when you have NF... Its frustrating, cant find anything.. I just gave birth to a beautiful boy, and, so far, he has no symptons.. I attend a clinic reguarly and he is due for a check up.. fingers crossed..GREAT SITE.. THANK YOU!!!! |
|
| Name: | John |
| E-Mail: | Jghd77@aol.com |
| City/State or Country: | Green Harbor, MA |
| Date: | Tue May 13 15:20:27 2003 |
| Wrote... I was told 4 years ago that I have NF and it wasn't until a month ago that I was told the exactness of what NF is and that I have NF1. |
|
| Name: | Kelly Mahoney |
| E-Mail: | kellym678@aol.com |
| City/State or Country: | Phx, Az |
| Date: | Mon May 12 04:10:14 2003 |
| Wrote... I am always impressed when I read this site. THANK YOU all who share and care. Shannon would be just another cute blonde, but she's not - SHE IS SPECIAL. You all make her feel like a wonder child. I can't thank you enough. My cousin Darryl is a dream. |
|
| Name: | Victoria Williamson |
| E-Mail: | Tori2288@adelphia.com |
| City/State or Country: | Harborcreek |
| Date: | Thu May 8 14:43:23 2003 |
| Wrote... My little 3 year old bother also has Neurofibromatosis. With this he has three tumors on his brain. I hope someday in the very near future they will come up with cure. |
|
| Name: | michael hayward |
| E-Mail: | michaelhayward573@msn.com |
| City/State or Country: | calgary albrta |
| Date: | Tue May 6 01:04:09 2003 |
| Wrote... hi my 9 year old son I also have nf1. |
|
| Name: | Samantha Sarager |
| E-Mail: | iicequeen123@aol.com |
| City/State or Country: | phx, arizona |
| Date: | Sun May 4 04:33:23 2003 |
| Wrote... Hi, I am Shannon's big sister! I love her SOOO much and an willing to do all I can to help to find a cure. |
|
| Name: | Susan Cagle |
| E-Mail: | susancagle@yahoo.com |
| City/State or Country: | CA |
| Date: | Sun May 4 03:13:50 2003 |
| Wrote... I am so glad to hear that Shannon continues to do so well! I think about her often. Miranda is due for her 6 month check for both her neuroblastoma and her scoliosis in a couple of weeks. Someday I hope she and Shannon can meet-I think of them as sister survivors of both NF and neuroblastoma. Big hugs to the whole family! Susan |
|
| Name: | SHARON J. |
| E-Mail: | rayegrafton@fbwebmaster.com |
| City/State or Country: | FORREST CITY, AR |
| Date: | Thu May 1 14:59:28 2003 |
| Wrote... TANNER,MY 6 YEAR OLD, HAS NF1 ALTOUGH WE HAVEN'T HAD ANY SET BACKS WHICH I PRAISE GOD FOR IT PUTS A STRAIN ON HIS RELATIONSHIP WITH HILLARY,MY 13 YEAR OLD,AND OURS. THANK YOU FOR YOUR WEBSITE MAYBE SHE CAN RELATE BETTER SEEING THIS AND MY HEART AND PRAYERS ARE WITH YOU, YOUR FAMILY AND FRIENDS |
|
| Name: | JENNY |
| E-Mail: | foppes@gtec.com |
| City/State or Country: | DOW ILLINOIS |
| Date: | Tue Apr 29 23:59:08 2003 |
| Wrote... I HAVE HAD NF1 MY WHOLE LIFE. I AM NOW MARRIED TO A WONDERFUL MAN, WHO SAID, WHEN I ASKED HIM IF HE COULD HANDLE THIS FOR ALL OUR LIVES " I LOOK @ U WOIT MY HEART, SO I DON'T SEE THEM" WOW!! WE HAVE A THREE YEAR OLD SON, JAMES, WHO ALSO HAS NF1. HANG IN THERE, YOU ARE NOT ALONE |
|
| Name: | Linda Bristow |
| E-Mail: | mbristow@triad.rr.com |
| City/State or Country: | Burlington,NC |
| Date: | Thu Apr 24 11:23:44 2003 |
| Wrote... You have a great website. Hope Shannon is doing well.I am busy mommy from the NF BB. |
|
| Name: | Victoria Sloan |
| E-Mail: | victoria_sloan@reyrey.com |
| City/State or Country: | Springboro, OH |
| Date: | Wed Apr 23 00:05:49 2003 |
| Wrote... My mom has NF2. She is my role model and I'm very proud of everything she has been through during the past 12 years. My sister and I are training for the Maui, HI Marathon to help raise money to further research this disorder and to hopefully someday find a cure. |
|
| Name: | Bytebier Justin |
| E-Mail: | Bluebyte001@hotmail.com |
| City/State or Country: | Bilzen |
| Date: | Mon Apr 21 13:41:13 2003 |
| Wrote... Tot all NF patient's. Your not forgotten. Take care, ... Greatz, Blue |
|
| Name: | Bytebier Justin |
| E-Mail: | Bluebyte001@hotmail.com |
| City/State or Country: | Bilzen |
| Date: | Mon Apr 21 13:36:56 2003 |
| Wrote... Good luck with your site, im'a NF patiant also, And 'm lucky to have a girlfriend who understands me. |
|
| Name: | Cathy Reynolds |
| E-Mail: | Creymolds@gtech.lship.org |
| City/State or Country: | Alabama |
| Date: | Mon Apr 14 23:26:50 2003 |
| Wrote... Shannon is a very beautiful little girl. Keep up the great work! Cathy |
|
| Name: | Glenn |
| E-Mail: | soachman@aol.com |
| City/State or Country: | Michigan |
| Date: | Sat Apr 12 14:08:07 2003 |
| Wrote... Thanks for the good information. God Bless you and keep up the good work. |
|
| Name: | Ateerah Ronaele |
| E-Mail: | krista_n_smith@hotmail.com |
| City/State or Country: | Philadelphia, PA |
| Date: | Thu Apr 10 19:05:49 2003 |
| Wrote... I have a neice with NF-1 and i am also doing a research paper on NF. I find it very interesting how people with this disorder can lead normal lives. |
|
| Name: | Rhonda |
| E-Mail: | vicnrhondo@rogers.com |
| City/State or Country: | |
| Date: | Tue Apr 1 02:21:55 2003 |
| Wrote... What a beautiful site and a special little girl. I have NF 1 and run a support group in my communtiy for those who suffer from NF. I will put this site on my desk top. |
|
| Name: | Shelia Camerom |
| E-Mail: | daisy70427 |
| City/State or Country: | Bogalusa Louisiana |
| Date: | Fri Mar 28 23:54:30 2003 |
| Wrote... Hello my name is Shelia and i'm 47 years old .I have the same disease that you have my is on my neck and face.I have had this desease since I was born.I also have a daughter that is 10 years old she also the samething hers is just the spots on her body. |
|
| Name: | Louise Cunningham |
| E-Mail: | Lovely_louise14@yahoo.co.uk |
| City/State: | Leven, Scottland |
| Date: | Fri Mar 21 16:42:56 2003 |
| Wrote... keep smiling shannon i know its hard but you are a gorgeous little brave girl. take care. xxxxxxxxxxxxxxxxxx |
|
| Name: | Tammi |
| E-Mail: | finley2@comcast.net |
| City/State: | Warren, mi |
| Date: | Thu Mar 20 23:35:59 2003 |
| Wrote... I saw your post on Nf board... I live like 1/2 mile from your city! Hope to talk to or meet ya sooN! My daughter is 3 and had NF. |
|
| Name: | Cherie |
| E-Mail: | Bikerchicktaken@aol.com |
| City/State: | Lynnwood wa, |
| Date: | Tue Mar 18 20:03:55 2003 |
| Wrote... Hello there my name is Cherie and I have NF1 I am 27 I would like to talk to ether people and see how they deal with it thank you.. |
|
| Name: | Michael Benbough |
| E-Mail: | michaelbenbough@hotmail.com |
| City/State: | Boise, ID |
| Date: | Tue Mar 11 21:18:23 2003 |
| Wrote... This is a wonderfull site...I presently have NF1....and yet to run into someone else with my disorder....Thank you...for your site |
|
| Name: | Kim Fletcher |
| E-Mail: | fletch37@msn.com |
| City/State: | Sackets Harbor, New York |
| Date: | Sun Mar 9 20:43:18 2003 |
| Wrote... Your dedication to finding a cure is so inspiring. It was a pleasure meeting you in Chicago and I look forward to seeing you again soon. Shannon and her family are lucky to have...so are we!! |
|
| Name: | Diantha |
| E-Mail: | nfmama@twcny.rr.com |
| City/State: | Dexter, New York |
| Date: | Sat Mar 8 19:43:18 2003 |
| Wrote... Shannon is so lucky to have a dedicated cousin like you! Your website is awesome! I am impressed! You may be a race director "wannabe" but you got me "beat" on technology! Good luck in all of your endeavors! I hope that people see this and are inspired to join "our NF Team." I've been involved in many clubs/ organizations over the years but the "NF Team" is by far the most inspirational, rewarding, family I have ever been a part of. Every race/marathon is like a homecoming reunion. Anyone who would like to make a difference in our world should consider doing a "race for research!" Godspeed! |
|
| Name: | Elizabeth Carver |
| E-Mail: | Elizabeth.Carver @co.macomb.mi.us |
| City/State: | St. Clair Shores, MI |
| Date: | Fri Mar 7 00:35:38 2003 |
| Wrote... Okay, I just got done reading the guestbook and I am all choked up. Darryl has rounded up about a dozen of us at work to help this cause and his goal of finding a cure is within reach, I can feel it! |
|
| Name: | Elizabeth Carver |
| E-Mail: | Elizabeth.Carver@co.macomb.mi.us |
| City/State: | St. Clair Shores, MI |
| Date: | Fri Mar 7 00:12:13 2003 |
| Wrote... Darryl, you are an incredible inspiration to many, including me. I cannot imagine what Shannon endures, but I sure am going to be there to do my best to help her life be as full and wonderful as possible. I cannot wait to run in the Long Beach Marathon in October. I, like you, have absolutely no training or experience in this, but I sure am willing to give it a try to help such a wonderful cause. All of the family, friends and victims of NF are in my prayers daily. Good Luck in all your endeavors!!! |
|
| Name: | Melinda |
| E-Mail: | mclousel@vbhcs.org |
| City/State: | Tennessee |
| Date: | Wed Mar 5 18:04:47 2003 |
| Wrote... Hello, I also suffer from nf1. I too have tumors, mostly in the brain. I suffer from headaches frequently. I enjoy the web and reading about others who have the same complications as myself. It makes it easier to deal with. Thanks to all who submit their brave and personal stories. |
|
| Name: | Linda Lee Udut |
| E-Mail: | volvo101@loversln.net |
| City/State: | Saint Clair.Pa |
| Date: | Thu Feb 27 00:07:56 2003 |
| Wrote... Glad Shannon is doing better. I also have nf1 and know its not easy to live with sometime. She will be in my prayers.. |
|
| Name: | Marcy |
| E-Mail: | sundevil1066@yahoo.com |
| City/State: | Phoenix, AZ |
| Date: | Sun Feb 23 22:20:54 2003 |
| Wrote... Darryl, Miss reading your posts on the NNFF bb. Shannon is in my prqyers as is the rest of your family. Thank you for the updates on your site. Marcy |
|
| Name: | Eloisa Mendez |
| E-Mail: | emendez@gavelintl.com |
| City/State: | Lake Villa, IL |
| Date: | Tue Feb 18 21:25:48 2003 |
| Wrote... My neice was diagnosed with NF1 before the age of 1, and has since developed an optic glioma and a fibroma on the left temporal lobe and is currently undergoing a 2nd round of chemotherapy. We feel your pain and thank you for the beautiful website and words of hope. Love, The Salgado Sisters |
|
| Name: | Patricia Harrington |
| E-Mail: | |
| City/State: | OttawaOn. |
| Date: | Thu Feb 13 23:56:07 2003 |
| Wrote... VERY INTERESTING, I WAS ABLE TO VIEW ANOTHER OPINION, WHICH WILL HELP ME IN MY SERCH FOR BREAKTHROUGH. PATRICIA HARRINGTON |
|
| Name: | Heidi LaRou |
| E-Mail: | hlarou@hotmail.com |
| City/State: | Kenmore, NY |
| Date: | Sun Feb 9 03:06:53 2003 |
| Wrote... I guess I have a reason to run a marathon now. Our 3 yr. old Madeline has NF1-we just found out, don't know what to feel yet. She is very small for her age (extremely bright) and has about 13 cafe spots. she has her first MRI in a month. Can't believe this is happening. Thanks for the site, i'll return. love to Shannon |
|
| Name: | Gloria Maldonado |
| E-Mail: | tomyglo@aol.com |
| City/State: | Indio,CA |
| Date: | Wed Feb 5 07:13:27 2003 |
| Wrote... I have a grandson who is now 12 yrs. old and he was diagnosed at the age of 3. He has 3 brain hematomas several tumors in the spine and all over his body. I have been raising him since he was 1 year old when my daughter his mommy passed away. I enjoyed your web page and the information it provides. Thank you |
|
| Name: | Shirley Zito |
| E-Mail: | SMZito@charter.net |
| City/State: | Birmingham, Alabama |
| Date: | Tue Feb 4 08:19:51 2003 |
| Wrote... My 3yo baby boy was diagnosed with nf by MRI 3 months ago. An optic glioma was found at that time. He is asymptomatic now. He is scheduled for a second MRI on Feb 5, Wednesday, and if the tumor has grown, they recommend chemotherapy. I have a scheduled appt. at MD Anderson NF clinic, if it has grown. What do you think of the Houstan NF clinic? Is there a better place in this Country? Shannon is precious. I feel your pain. Thanks Shirley |
|
| Name: | Kurt Golz |
| E-Mail: | kurt_golz@adp.com |
| City/State: | NYC/NY |
| Date: | Fri Jan 31 05:23:55 2003 |
| Wrote... Looking for Info on Immutol. From people who are using it. |
|
| Name: | lorne chapman |
| E-Mail: | housearrest@seacove.net |
| City/State: | kempner texas |
| Date: | Thu Jan 30 03:36:26 2003 |
| Wrote... hello ,new to the nf site and nf.you will hear more from me im sure.good luck and GOD bless. |
|
| Name: | Nancy Guzik |
| E-Mail: | momontherun59@aol.com |
| City/State: | Middletown,NJ |
| Date: | Sat Jan 25 01:16:33 2003 |
| Wrote... I know this is a difficult time.. But know, there are others out there, going through their own ordeals, but know that each one of us knows exactly how difficult this time is. But with faith, hope and the knowledge of those who are helping us, there will be treatment, cure and eventually total ridance of this disorder. My prayers are with Shannon, her family and all those who are undergoing anything dealing with NF. Keep up your awareness on NF... My daughter,Michelle 16, needs a cure!! Nancy |
|
| Name: | Julie Hixson |
| E-Mail: | jh682@dcx.com |
| City/State: | Sterling Heights, MI |
| Date: | Fri Jan 24 01:43:52 2003 |
| Wrote... Darryl - What a beautiful website!! You are one in a million. I am so lucky to have spent the last 4 miles or so with you and your brother in the Disney Marathon! WE DID IT! What a great accomplishment and wonderful feeling being there in honor of of our loved ones. Take care! |
|
| Name: | michelle orourke |
| E-Mail: | michiee66@hotmail.com |
| City/State: | etobicoke ontario |
| Date: | Wed Jan 15 23:15:10 2003 |
| Wrote... hi i wish u all the luck in the world my 5 year old son has nf 1 so i know and undersatnd |
|
| Name: | Jennifer |
| E-Mail: | jwillard2@cfl.rr.com |
| City/State: | ocala, fl |
| Date: | Wed Jan 15 19:15:35 2003 |
| Wrote... Hi. 2yr old daughter with nf1 and plexiforms tumors on her face. she also has glaucoma and is blind in her right eye.have a 1yr with nf1 also. trying to find someone who understand. |
|
| Name: | michelle orourke |
| E-Mail: | michiee66@hotmail.com |
| City/State: | etobicoke |
| Date: | Wed Jan 15 02:45:20 2003 |
| Wrote... hi great site my 5 year old son has nf1 still much to learn but im hoping they find a cure |
|
| Name: | michelle orourke |
| E-Mail: | michiee66@hotmail.com |
| City/State: | etobicoke |
| Date: | Wed Jan 15 02:32:46 2003 |
| Wrote... hi just wanted to say hi , my 5 year old son has nf 1 and would like to share some information |
|
| Name: | mom |
| E-Mail: | sandwomansix@aol.com |
| City/State: | center line, mi |
| Date: | Mon Jan 6 17:35:58 2003 |
| Wrote... darryl, you will be in our thoughts and heart as you run the marathon on Sunday.Good luck, take care of yourself. love from mom & dad |
|
| Name: | Tammy |
| E-Mail: | graceek98@hotmail.com |
| City/State: | jax,fl |
| Date: | Sun Jan 5 18:49:04 2003 |
| Wrote... Im a 39year old with n.f.1. I was wondering if you could tell me if eating a diet that consist of soybeans has any effect on nf. I was told at one time that it increases that amount of bumps. could some one please help. Thank you. Tammy |
|
| Name: | Bill Stewart |
| E-Mail: | bstewart@peacock.ca |
| City/State: | Milton, Ontario |
| Date: | Tue Dec 31 17:24:03 2002 |
| Wrote... The research does look promising. Hopefully NF will be more managable in the future. My NF has not affected me as much as some people, I consider myself very lucky. |
|
| Name: | Kerry Lynn Lambert |
| E-Mail: | familylambert@hotmail.com |
| City/State: | vancouver, wa |
| Date: | Mon Dec 30 20:40:10 2002 |
| Wrote... I'm glad to have found your site. I am just learning about this disease as my daughter was born with a very large cafe-a-lait spot and I am worried. God bless your efforts. |
|
| Name: | Rhonda |
| E-Mail: | vicnrhondo@execulink.com |
| City/State: | ontario |
| Date: | Sat Dec 28 22:10:39 2002 |
| Wrote... I'm 38 and have NF1, this is a beautiful site, what a special cousin you are to do this for Shannon. There are so many of us out there and we all need to love and support one another. Let's all do all that we can to raise money , find the cure , so that no one has to suffer ever again. My thoughts and prayers are with Shannon now and always. |
|
| Name: | Maryam |
| E-Mail: | hussaini90@hotmail.com |
| City/State: | kuwait |
| Date: | Sat Dec 28 10:34:39 2002 |
| Wrote... I'm a mother for a child of 2 years old with NF1 he the second baby , alswo i lost my firest baby with the same desease and alswo he had a NON HUDGECIN LEMFOMA whil he was 18 Months. |
|
| Name: | Cathie |
| E-Mail: | cathievaldez1969@sbcglobal.net |
| City/State: | DeSoto, Missouri |
| Date: | Sat Dec 28 03:47:49 2002 |
| Wrote... Hi, I was serching the net to find info on this disease. My mother and I were diagnosed with NF just today. I am glad there is info about this. I am new to this and unsure as what will happen next, thank you for your site. |
|
| Name: | sherry |
| E-Mail: | shoppingprincess@sbcglobal.net |
| City/State: | San Antonio,TX |
| Date: | Tue Dec 24 02:42:54 2002 |
| Wrote... Fantastic website. I will keep your cousin in my prayers. Sherry |
|
| Name: | lynn |
| E-Mail: | wolfchick2003@yahoo.ca |
| City/State: | alberta |
| Date: | Thu Dec 12 16:24:05 2002 |
| Wrote... hi my son is 8 yrs old and has nf1 and suffers from grande and petite mal seizures dut to the nf he also has plexiform fibromas and suffers from cognitive delay i thought that i would let u know that u are not alone |
|
| Name: | Connie |
| E-Mail: | shawncowan@telus.net |
| City/State: | British Columbia |
| Date: | Sun Nov 17 05:07:47 2002 |
| Wrote... My prayers are with Shannon. That is a lot for a young child to go through. |
|
| Name: | Nakia Wilson |
| E-Mail: | lbrownbomber@aol.com |
| City/State: | San Diego California |
| Date: | Sat Nov 16 00:33:47 2002 |
| Wrote... Came to say HI! and thanks for the info. and the supportand effort you have put in to help Shannon and all those of us with Neurofibromatosis Thank You. |
|
| Name: | sirino x |
| E-Mail: | sirino2\2yahoo.com |
| City/State: | o'fallon mo |
| Date: | Wed Nov 6 15:18:23 2002 |
| Wrote... thx for helping me with my school project i go to fzw |
|
| Name: | Jim Cowan |
| E-Mail: | jcowan@campbell-ewald.com (work) |
| City/State: | Clinton Twp., Mi |
| Date: | Wed Nov 6 13:55:11 2002 |
| Wrote... Darryl, My prayers to your cousin and you. May God bless her, and keep her from harms way. Jimmy |
|
| Name: | Ashley |
| E-Mail: | extentofmysoul@aol.com |
| City/State: | Orlando, FL |
| Date: | Tue Nov 5 17:07:48 2002 |
| Wrote... My mother has NF, and it is exceedingly difficult to cope with social ignorance of such stigmas. I am elated to have found such a website dedicated to support of and research for persons affected by NF. Thank you and God bless you all! |
|
| Name: | Julie Anderson |
| E-Mail: | jka@extremezone.com |
| City/State: | |
| Date: | Sun Nov 3 23:24:06 2002 |
| Wrote... As a friend of Kelly's, I thank you so much for such a nice page on behalf of Shannon. Our prayers are definitely with her! - Julie Anderson |
|
| Name: | Barney & Vaneta Foster(Jaime Lindauer's parents) |
| E-Mail: | barneylee1@aol.com |
| City/State: | Sahuarita, Arizona |
| Date: | Sat Nov 2 19:52:54 2002 |
| Wrote... Our thoughts and prayers are with your family at this time. |
|
| Name: | jaime foster lindauer |
| E-Mail: | jaime6@cox.net |
| City/State: | phx. az. |
| Date: | Sat Nov 2 15:31:14 2002 |
| Wrote... kelly, we are all still on the bus with you. whatever, and whenever your family needs us. let me know when you want some more "joe's"!! xxoo jaime |
|
| Name: | Joe |
| E-Mail: | jfdukes@yahoo.com |
| City/State: | hauppauge ny |
| Date: | Sat Nov 2 00:32:28 2002 |
| Wrote... hello= i have a mild case of neurofibromatosis 1 and am ok. i was diagnosed after 3 yrs of research to diagnose me. in my opinion that is slow. i hope there is a cure soon to. i dont think they are putting enough effort into it. thats insane and uneceptable if you ask me. |
|
| Name: | bev |
| E-Mail: | sandwomansix@aol.com |
| City/State: | center line, mi |
| Date: | Fri Nov 1 17:40:44 2002 |
| Wrote... Thank you, Shannon's mom, for letting us all know how shannon is doing and going through. We pray for you and Shannon daily. |
|
| Name: | Shannon's mom |
| E-Mail: | kellym678@aol.com |
| City/State: | phx, az |
| Date: | Fri Nov 1 03:06:40 2002 |
| Wrote... THANK YOU ALL VERY MUCH FOR YOUR PRAYERS. IT DOES MAKE A DIFFERENCE! SHANNON'S FIRST TEST (PET SCAN) CAME BACK "EXCELLENT". NEXT WEEK SHE GOES IN FOR ANOTHER. THIS CHALLENGE HAS CHANGED MY LIFE AND MY COMMITMENT TO PRAYER. I WISH I COULD BETTER EXPRESS MY THANKS TO YOU ALL. |
|
| Name: | Tammy Sowards |
| E-Mail: | dukes-24@msn.com |
| City/State: | lake city, Fl |
| Date: | Thu Oct 31 18:34:03 2002 |
| Wrote... Hi my daughter Madison was diagnosed with NF 1 and Congenital Psedoarthrosis at 3 months old, due to a gene mutation. She is now 1 year old and recently had her left leg amputated below the knee due to the Pseudoarthrosis. It has been a really rough past year emotionally. I have never been more inspired by anyone like I have been by Shannon and especially Shannon's cousin. It is time to make a difference- instead of always thinking and saying "why me, why my daughter" I am tired of people saying "neuro-what" just like I did 9 months ago to the day!! There is so much that needs to be done, and I have to believe that I to can make a difference. WE ALL CAN!!! |
|
| Name: | Elizabeth Ann |
| E-Mail: | lizzy_royle@hotmail.com |
| City/State: | Coventry |
| Date: | Mon Oct 28 22:47:38 2002 |
| Wrote... my 16 month old daughter is waiting on results on weather she has NF.I'm praying all goes well but if not i hope she can be as brave as Shannon.She sounds like a very sweet and brave little girl.i'm glad she has such a supportive family around her.i wish her all the luck in the future. xxx |
|
| Name: | Rev. Ricky Joe Thompson |
| E-Mail: | casarecov@aol.com |
| City/State: | Oklahoma City, Oklahoma |
| Date: | Sun Oct 27 17:19:03 2002 |
| Wrote... Shannon will remain in our prayers, My wife and I lost a child to a simular disease before we knew the Lord. Their is no words that can explain the feeling. Thank God you know Jesus! He is the answer. God bless you all. Rev. Ricky Joe Thompson C.A.S.A. Recovery Ministries |
|
| Name: | Roger and Gwen Day |
| E-Mail: | whitedoveharp@ famvid |
| City/State: | Springfield/Ill |
| Date: | Sat Oct 26 04:03:02 2002 |
| Wrote... We will be praying for Shannon. He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler. Psalm 91:4 |
|
| Name: | Shannon's mom |
| E-Mail: | kellym678@aol |
| City/State: | phx az |
| Date: | Wed Oct 23 06:56:26 2002 |
| Wrote... We found out tonight that Shannon has a tumor near her left kidney. Tomorrow she will be admitted into the hospital. PLEASE KEEP HER IN YOUR PRAYERS. As you all continue to be in ours. |
|
| Name: | Heather Meyer |
| E-Mail: | ess58@adulted.edu |
| City/State: | |
| Date: | Tue Oct 15 18:39:12 2002 |
| Wrote... My twin sisters have suffered from N.F all of their lives. As a child I used to play surgery and "magically" remove the cafe patches off thier bodies. As children, we had no comprehension of this terrible disease. For my sisters, and many others, I will join the fight for a cure!! Heather |
|
| Name: | LaDy RhuBaRB AnD ThE PooKa |
| E-Mail: | harpzombie@webtv.net |
| City/State: | Warren, Michigan |
| Date: | Mon Oct 14 17:53:49 2002 |
| Wrote... MOONWINKS AND FAERIE KISSES Been tuning up me braes and shining up me pipes, for when it is yer bedtime the Fae will come to play. For ye will not hear us. We plays when yer a'sleep-in. Quiet as a whisper, in we come a'creep-in. We fill yer dreams with FAERIE KISSES and MOONWINKS from on high... and wishes for a lifetime of ! HAPPINESS AND LIGHT! Written BY: LaDy RhuBaRB AnD ThE PooKa =^..^= Blessed Be Little Shannon |
|
| Name: | kelly |
| E-Mail: | kellym678@aol |
| City/State: | PHX AZ |
| Date: | Wed Oct 9 21:09:18 2002 |
| Wrote... KEEP THE FAITH A CURE CAN BE FOUND! |
|
| Name: | Erin De More |
| E-Mail: | chocolatelabus@yahoo.com |
| City/State: | Pittsfield, PA |
| Date: | Wed Oct 9 16:45:05 2002 |
| Wrote... My friend, Mike Rigo, died from Neurofibromatosis on September 13th. Mike had suffered from Neurofibromatosis for 20 years and the disease had a devastating effect on him. It left Mike with severe nerve damage in his left arm and he also was paralyzed from the waist down for 8 years because the N.F. had caused tumors to grow near his spine causing severe damage to his spinal cord. N.F. had also caused tumors to grow near Mike's heart and lungs which is what killed him. Now I want to know what's being done to find a cure for N.F. so that no one else will have to suffer and die like Mike did. N.F. can kill people just as easily as cancer or diabetes. Let's get involved and help find a cure for this terrible disease. |
|
| Name: | Sarah Forrester |
| E-Mail: | rose_buds20002000@hotmail.com |
| City/State: | McKinleyville, California |
| Date: | Sat Oct 5 16:41:38 2002 |
| Wrote... You and your family are in out prayers. My husband has NF1. We have 2 kids that was born with out it. May God bless you all. |
|
| Name: | marjorie beavers |
| E-Mail: | pattibea@hotmail.com |
| City/State: | webberville, michigan |
| Date: | Thu Oct 3 05:06:01 2002 |
| Wrote... my 2 year old grandson has nf. he has many tumors and fibormas and way too many spots to count. i worry daily and pray each day for help. i also pray for all that i have meet, now you and your family are added on thank you for sharing your story with me. i know each day a prayer is been said for you. we now have to leave t in gods hands |
|
| Name: | Dona Copeland |
| E-Mail: | copelanddtx@aol.com |
| City/State: | Jefferson, Texas |
| Date: | Wed Oct 2 17:13:40 2002 |
| Wrote... I have NF1 as well, mine is on the sever side, I have numerous tumors on the inside and hundres on the out side. You did a wonderful thing by getting this web site. Good job on it to easy to navagite,,as I am no good with things like that. |
|
| Name: | Tim Flanigan |
| E-Mail: | shartim0408@netzero.net |
| City/State: | sterling hgts. mi. |
| Date: | Wed Oct 2 16:55:32 2002 |
| Wrote... Daryl,My daughter's best friend just died of leukiemia. There's nothing worse than a child in pain or losing a child to a terrible disease. Good luck in this endeavor and to your cousin |
|
| Name: | JUDY LYNN CARPER |
| E-Mail: | VOLGIRLJLC@CS .COM |
| City/State: | BLUFF CITY TENNESSEE |
| Date: | Mon Sep 30 11:23:37 2002 |
| Wrote... HELLO I FOUND OUT WHEN I WAS 6 YEARS OF AGE I HAD ALOT IN MY LEFT FOOT WHEN I WAS 21 THEY HAD TO REMOVE MY FOOT IF NOT I WOULD NOT BE HERE TODAY . IM LUCKY SO FAR NO TUMORS IN MY HEAD . HAS MOST OF US THAT HAVE NF 1 WE HAVE THE SKIN TUMORS IM NOT SURE IF NF2 HAS THEM . YOU CAN E MAIL ANYTIME . |
|
| Name: | Gaylene Morancy |
| E-Mail: | mmorancy@sunwave.net |
| City/State: | Salmon Arm, B.C. |
| Date: | Sun Sep 29 19:37:31 2002 |
| Wrote... Hey, Very cool website!! |
|
| Name: | donnna haughwout |
| E-Mail: | don_don833@yahoo.com |
| City/State: | lanoka harbor |
| Date: | Sun Sep 29 18:32:24 2002 |
| Wrote... HI MY NAME IS DONNA I'M 32 YRS OLD,I'M MARRIED AND HAVE A DAUGHTER WHOM IS 11 YRS OLD. I FOUND OUT THAT I HAD NF WHEN I WAS 7 MONTHS PREGANT AND THA WAS ABOUT 12 YRS AGO. I KNOW WHAT YOU AND YOUR FAMILY IS GOING THROUGHT, |
|
| Name: | carl burt |
| E-Mail: | CARL_BURT@msn.com |
| City/State: | Ft Worth/ Texas |
| Date: | Sun Sep 29 17:06:53 2002 |
| Wrote... HI IM CARL AND I TO HAVE NF1 I KNOW WHAT YOUR NIECE IS GOING THROUGH GOOD LUCK AND GOD BLESS WE HAVE A CHAT ROM FOR NFers ITS AT WWW.NF.ORG PLEASE COME IN SOME TIME AND MEET EVERYONE |
|
| Name: | carl burt |
| E-Mail: | CARL_BURT@msn.com |
| City/State: | Ft Worth/ Texas |
| Date: | Sun Sep 29 17:04:07 2002 |
| Wrote... i to have nf1 im 45 now and i know what your niece is going through good luck to her and God bless we have a chat room your very welcome to come in and meet everyone it's at www.nf.org |
|
| Name: | gordon tolson |
| E-Mail: | grtol23@mybluelight.com |
| City/State: | Modesto, CA, |
| Date: | Sun Sep 29 16:11:46 2002 |
| Wrote... I too have NF. I found out late in life when I was 17, and tried to join the Army. |
|
| Name: | John Hamelin |
| E-Mail: | jhamelin@dreamscape.com |
| City/State: | Utica, NY |
| Date: | Sun Sep 29 13:21:11 2002 |
| Wrote... Your site is wonderful, very informative, keep up the good work |
|
| Name: | DonnaLP |
| E-Mail: | dustydorri@yahoo.com |
| City/State: | DeSmet ,South Dakota |
| Date: | Sun Sep 29 06:44:29 2002 |
| Wrote... Nice website Darryl! Thanks for helping to spread awareness of NF. |
|
| Name: | Marcy |
| E-Mail: | marcyandre@qwest.net |
| City/State: | Phoenix, AZ |
| Date: | Sun Sep 29 04:15:55 2002 |
| Wrote... You have done a wonderful job. Thank you for helping spread the word about NF. God bless you and your family. |
|
| Name: | Bonnie |
| E-Mail: | droppy220@earthlink.net |
| City/State: | Charlestown, IN |
| Date: | Fri Sep 27 07:20:40 2002 |
| Wrote... this is great, I only wish more family members would be like you. I'm 51 and I have NF and I'm not afraid to tell the world that I do. God bless you for what you are trying to do. Please overlook any misspelled words. |
|
| Name: | Sandy |
| E-Mail: | sandy200122001@yahoo.com |
| City/State: | Fraser, MI |
| Date: | Thu Sep 26 01:24:19 2002 |
| Wrote... Darryl, you are truly an inspiration. Your cousin is so lucky to have you in her family. If you have anything to do with it, there WILL be a cure for NF real soon!!!! Best of luck in your extraordinary endeavor....GO GREEN!!! |
|
| Name: | bjs |
| E-Mail: | bjs1956@msn.com |
| City/State: | steubenville oh |
| Date: | Wed Sep 25 01:07:43 2002 |
| Wrote... good luck to all and god bless |
|
| Name: | Kristen Day |
| E-Mail: | KayCe234@aol.com |
| City/State: | Massachusetts |
| Date: | Wed Sep 25 00:54:21 2002 |
| Wrote... Darryl What a great website and what a wonderful cousin and person you are. I found your website from your message on mine and I hope you won't mind if I add you to my link page. God Bless |
|
| Name: | juliet |
| E-Mail: | marcabbt@aol.com |
| City/State: | quaker hill ct |
| Date: | Tue Sep 24 03:26:50 2002 |
| Wrote... I just read about your web site on the nf bulletin board. My two year old son has nf1 with a plexiform neurofibroma on his left buttock/lower spine and tibial bowing of his left tibia. This illness is a nightmare and most people have never heard of it. I think we really need to make people aware of this illness and get more people behind supporting treatment research. I am doing everything I can to research treatments for my son both conventional and alternative. I have learned not to always take what the doctors say as a given. Your relative is very young but I have read that Keppra can help with the pain. I have my son on Immutol (beta glucan) which is supposed to help reduce tumors. It is a natural substance. It is too soon yet for me to pass judgement on how effective it is. I also have the protocol used by Dr. Bruce Korf at Ma. General. This protocol is used when they take the mri's and gives you a true measurement of the size of the tumors. I wish you all the best. |
|
| Name: | Michael Gergley |
| E-Mail: | mpg.11@netzero.net |
| City/State: | El Cajon, California |
| Date: | Tue Sep 24 01:23:53 2002 |
| Wrote... Darryl, What a wonderful start to a most ambitious and worthwhile project. As a member of the NF Marathon team and on behalf of all us with NF, I say thank so much for helping in such a big way. Your cousin Shannon is very lucky to have you in the family and we here of the NF family are,too! God bless you. Sincerely, Michael Gergley (Ghostwriter4) NFBB |
|
| Name: | vivienne |
| E-Mail: | viv_browneyes@hotmail.com |
| City/State: | Los Banos, California |
| Date: | Thu Sep 19 07:54:56 2002 |
| Wrote... my sister has nf2 and we both enjoyed your site good look and god bless. |
|
| Name: | larry |
| E-Mail: | chef3981@yahoo |
| City/State: | new baltimore, mi |
| Date: | Tue Sep 17 01:14:50 2002 |
| Wrote... we are all very proud of you darryl.but i know that is not what matters.what matters is that the miracle of a cure will be discovered.i believe that if the research scientists have half of your enthusiasm it will happen soon...L |
|
| Name: | kelly mahoney |
| E-Mail: | kellym678@aol.com |
| City/State: | phx. az |
| Date: | Mon Sep 16 05:46:21 2002 |
| Wrote... I LOVE YOU MORE THAN WORDS CAN EXPRESS. YOUR KINDNESS AND BRAINS AMAZE ME. |
|
| Name: | Irlean Keyes |
| E-Mail: | ikeyes@portup.com |
| City/State: | McMillan, Michigan |
| Date: | Fri Sep 13 01:16:07 2002 |
| Wrote... Very nice site. |
|
| Name: | Jeff Droske |
| E-Mail: | jdroske@hotmail.com |
| City/State: | clinton twp, mi |
| Date: | Wed Sep 11 08:36:12 2002 |
| Wrote... Excellent site, will be sending in additional donation friday. Tell all your family I am thinking about them. Jeff |
|
| Name: | Bernice Merlos |
| E-Mail: | bmerlos@hotmail.com |
| City/State: | royal oak/Michigan |
| Date: | Wed Sep 11 07:23:17 2002 |
| Wrote... YOU ARE DOING SOMETHING GREAT. I WILL HELP AS MUCH AS I CAN. THE SITE IS VERY INFORMATIVE. |
|
| Name: | Lynda Jacobs |
| E-Mail: | Beat81@yahoo.ca |
| City/State: | Aylmer, PQ |
| Date: | Tue Sep 10 22:12:13 2002 |
| Wrote... Nice site - the research articles give me hope - good luck with the race and the fund-raising! Lynda |
|
| Name: | Henry |
| E-Mail: | hlippincott@hotmail.com |
| City/State: | Millville / NJ |
| Date: | Tue Sep 10 18:15:10 2002 |
| Wrote... Cool idea! I can't make the Orlando but I would like to run one of the other NF Marathons. I will talk to you soon. Henry |
|
| Name: | Faustino rodriguez |
| E-Mail: | frodriguez@home.com |
| City/State: | Clawson |
| Date: | Mon Sep 9 12:55:25 2002 |
| Wrote... good luck and keep working hard. |
|
| Name: | Garry Sopfe |
| E-Mail: | info@pbgs.net |
| City/State: | Michigan |
| Date: | Sun Sep 8 17:00:28 2002 |
| Wrote... Nice site, Good Info. Sent in a small donation hope it will help! |
|
| Name: | George Knowles |
| E-Mail: | Trapper102@hotmail.com |
| City/State: | Atlantic City/NJ |
| Date: | Sun Sep 8 00:16:40 2002 |
| Wrote... Hello, I just sent in a donation. Good Luck! |
|
| Name: | bev |
| E-Mail: | sandwomansix@aol.com |
| City/State: | center line, mi |
| Date: | Sat Sep 7 06:43:10 2002 |
| Wrote... very informative site. i hope a cure is found soon. good luck on the race. i hope a lot of money is raised. it is a good cause. |
|
| Name: | Charles Johnson |
| E-Mail: | C.johnson@jtech.com |
| City/State: | Philadelphia, PA |
| Date: | Tue Sep 3 14:48:44 2002 |
| Wrote... Site looks good, Thanks for the info. Please keep me updated. |
|
| Name: | Gregory Leino |
| E-Mail: | Gregory.Leino@UTSouthwestern.edu |
| City/State: | Dallas/Texas |
| Date: | Tue Sep 3 02:51:35 2002 |
| Wrote... Good luck with your run. I just sent in a donation via your website. I wish you luck. Also, thank you for posting the articles about Neurofibromatosis research, they were very informative. Best Regards, Greg |
|
| Name: | GLENN |
| E-Mail: | soachman@aol.com |
| City/State: | |
| Date: | Tue Sep 3 01:10:50 2002 |
| Wrote... Please keep me informed. I really like your site! |
|