These are messages from my old guestbook. Due to SPAM I had to update to a newer guestbook.

For the new guestbook click here

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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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!