| 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. |
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| Name: | GLENN |
| E-Mail: | SOACHMAN@AOL.COM |
| City/State or Country: | |
| Date: | Fri Sep 10 00:25:45 2004 |
| Wrote... GOOD LUCK IN DISNEY |
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| 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!!! |
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| 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. |
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| 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.*** |
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| Name: | Dana |
| E-Mail: | dana20@bezeqint.net</ |