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Julie Elmquist |

Hey Darryl! Long time no talk! Keep running - you're an inspiration and awesome support to the NF community. 15 August 2008 - Ankeny Iowa

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Laura Porterfield |

Watched the video of precious Kadyn. Want to know how he's doing! 18 July 2008 - Hamtramck, MI

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Peter & Chris Dingeman |

He Shannon ~ Hope you are hanging in there. Pete has put you in his most recent donation request letter for Virgiania beach as one of his heroes. You are in our prayers and thoughts always. Love, Pete and Chris Dingeman 19 July 2008 - Shelby Township, MI

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Bill Baroner |

hi!! just dropping buy to say hello! :) 11 June 2008 - Australia

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Rosalinda Tostado |

My Prayer's are with you and your family, I just seen the you video, and I was so touch. may God keep you safe always. 7 June 2008 - Chicago ILL

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DAVID |

HI MY NAME IS DAVID. I LIVE IN SAN ANTONIO TEXAS AND I HAVE NF1. I AM A STUDENT AT UTSA,AND ABOUT TO GRADUATE. CAN SOMEONE EMAIL WITH UP COMMING NF EVENTS IN THE AREA. I WANT TO WISH EVERYONE A HOPEFULL YEAR AND THE BEST. DAVID 16 May 2008

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Colleen Rollins |

Just found your website & found it to be very interesting. I am thinking very seriously about doing the walk in Shelby Township, MI. My 10 yr old daughter has NF, & am hoping she'll be able to meet new friends that have NF. ---Colleen Rollins 25 February 2008 - Au Gres, MI

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deb spencer |

HAPPY BIRTHDAY SHANNON!!!!!!! Love, Deb 19 December 2007 - Shelby Twp.

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Juliann Barnhard |

I have segmental schwannomatosis. I have had 3 tumors removed from my lumbar/sacral region. The first when I was 19 and the other 2 when I was 26. I went almost 10 years without pain. It came back in November of 2000. Still waiting for someone to give a damn and help me. Both of my legs/feet are going numb and I fall frequently. I am 43 now. Could not have children because of this. Please keep up the good work so hopefully my 7 years of pain will not last much longer. 10 December 2007 - Clovis, CA

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Sharon O'Prey |

We just ran & walked (our team) the Children's Brain Tumor William's Walk/Run today for our 2nd year. Lauren our 20 year old was diagnosed with NF2 3 years ago and has had 2 surgeries. She is a UGA student - Go DAWGS! Because Lauren will be 21 next year we would like to do the NF Walk/Run in Atlanta,GA. Can you send us information. Thanks! 3 November 2007 - Woodstock, Georgia

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Glen J Hausfeld |

HI, I have NF 1 and 2 because of it I have no childern. I am almost 58 and having NF is no fun. I am not sure what to say. Good luck to you all. so for now bye, bye Glen 1 November 2007 - Minneapolis MN

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Bobbi Getch |

Hey NF TEAM! Saw you yesterday! RU Running tonight? 11 October 2007 - Clinton Twp. MI

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Lexi Sambrinos |

Love all the Photos. Go NF Team!! 11 October 2007 - Macomb, MI

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IANGY SPAULDING |

I HAVE NF1 7 September 2007 - PALM CITY,FL.

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Sally Spears |

My husband and 15 year old son both suffer from NF 1 31 August 2007 - Royal Palm Beach, FL

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David Adams |

Iam 56 had at lest 26 operations some related to my nf 1 some not.on the 31st i will again have another to removed some tumors from my left arm.that cause numbness and thingling in my hand and fingers, they is some nerve blockage.also i have some of the same thing going on in my right hand. my balance isnt that good, also the nerve results i had for my neck thr Dr. didnt like.Could i have tumors on my spinal cord again? i had 3 small ones removed back in 1990.i had to learn to walk all over again from that operation which lasted for 11 hours and 3 weeks in the hospital.I hope not,if one can help me please let me know Thank-You. (dave Adams). at papabear72551@hotmail.com 12 August 2007 - Sumas, Washington

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Kate

Son (6) and husband has NF1. Son just diagnosed with optic glinom and not really suer what all this means. Had vision test and vision is normal. Docs say that these will sometimes not pose a problem. Anyone else hear that? 9 August 2007 - Peabody, Ma

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Maria Lease |

My son is 5yrs. old and has some criteria of mosaic segmental nf1. He has no learning disabilities. In fact, he is very bright. I would like to get more infor. on this type of the disease. Also would like info. of alturnative medicine, supplments for suppressing and for eyes, etc. Can you help me. Thanks, Maria 7 August 2007 - Metuchen, NJ 08840

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Rebecca |

My son is 4 years old and has NF1. I was looking about awarness and things and came across this. Im hopeing to find other parents going thru the same thing! Email me at Jdsgirl3@yahoo.com if you are going thru the same thing and just want to talk. 3 August 2007 - Missouri

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amber myers |

hey i have nf1 it sucks! but i look normal and stuff i have lots of spots. 2 August 2007 - sandsprings ok

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MEILY

MY 21 MONTH SON WAS DIAGNOSE WITH NF1 ON DEC 15 I WANT TO TALK TO SOME ONE WHO HAD EXPERIENCE THIS BECAUSE THIS IS NEW FOR ME AS A NEW MOTHER 31 July 2007 - AMTERDAM NY

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paula , nicole & brandon |

hello i just wanted to sign your book.i am a mom of 2 kids.we all 3 have nf2.my son brandon and i have lost our hearing from it.my daughter has a tumor on her brain steam.i was looking up as much on nf as i could find,and found this website.if i could have one wish in this world i think i would wish for a cure on nf,because it has taken so much from my kids and me and there is nothing i can do.i wish you the best shannon.always try to wear a smile no matter. 29 July 2007 - Wise County , VA.

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Sandy Paden RN BSN CHPN |

Hello from Alabama. My daughter 14 years old has NF1. I will be in the Pheonix Rock 'n' Roll Marathon. Loved your web site. 23 July 2007 - Foley, Alabama

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Faby LeColst |

The first Annual “Steps 2 Cure NF” run and walk will be on September 9th, 2007 and will take place at Horn Pond in Woburn,MA. We’d like you to consider running, walking, volunteering or sponsoring Stephan (my Son with NF2) for this event. Donations of juice boxes, Gatorades, cereal bars or raffle items (any kind) would be greatly appreciated. Every little bit helps! For more information please visit the NF INC New England area website. Thank you! 12 July 2007 - Middleton, MA

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fotinorod |

Hi I am Lucy, I have found your website while searching for some info at Google. Your site has helped me in a big way. G'night 7 July 2007 - uk

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Lauri Fowler |

Hey there--looking up info on optic gliomas and found this site. I have nf1 as do both my son (8) and my daughter (4). She has and og and had a debulking in 8-06. One of our drs mentioned something about sometimes the optic gliomas invalude (which means they go away on their own). Has anyone else heard of this? No where else have we been told this. Take care. Lauri 24 June 2007 - Rock Hill, SC

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robin |

i have nf 1 and im looking for a support group in my area, and maybe a doc that can help me with the problems im having 19 June 2007 - union mo 63084

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pearly |

Dear Shannon, I too have NF but after reading your site I feels that you are a brave person and I hope and pray that everything goes will with you. God bless 5 June 2007 - malaysia

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Joyce Kurtz |

I have NF1 and am interested in finding a doctor familar with Electro Desiccation in the Los Angeles, CA area. Can you help? 16 May 2007 - Los Angeles, CA Webmaster comments   response sent by email.

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Siobain fairbanks |

hello my daughhter and i have nf1 as does my dad and sister 16 May 2007 - Australia

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Anne |

Good Luck to all of you! I am 19. I have NF2, and recently lost my hearing, to that. I had surgery in April, and have been on fast recovery! I ran my first marathon in March, at ING Georgia Marathon, with NF Marathon Team! (together, dad and I raised over $8,000 for NF Research!) I'm hoping for lottery granted entry for NYC Marathon! This is an awesome team! God Bless! 12 May 2007 - Atlanta, GA

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Pamela |

Hello, I have NF1. I am a 54 year old woman who has for many years searched in her area for a support group for NF but there was none to be found. I pray your son is well. Thank you for this site. 9 May 2007 - Myrtle, Mississippi

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lisa barker |

everyone should help to make nf more known my cousin has nf he is 16 and were doing a sponsored 26 mile walk this year 3 May 2007 - doncaster england

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Jill Schroeder |

My grandson,Kadyn David Hogg was diagnosed with NF1 at 3 months. He is now 2 years old. Last week he began his first session of chemo for optic tumors. He will have chemo once a week for about a year. He is doing so well with no side effects. He only weighs 26lbs so you can imagine how cute he is. I told his older brother, Dylan that Kadyn goes to the hospital to have angel dust put into his booboo on his chest. I am proud to be this little angel's nana. Love to all, Kadyn's nana 3 May 2007 - Greensburg, Indiana

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Patricia S.

My daughter Alyson was diagnosed with NF1 approx. 6 months ago. It took 15 months for the genitic results to come in. In her 2 year life span she has consulted more specialists than I can count, had open heart surgery to repair defects and faces another surgery in the future. Today we got the results of her first CT scan, 3 dark spots, the largest just behind the optic nerve ( the size of a mans thumbnail). I don't know how worried to be, there seems to be noone in our area that understands what all this means. 2 May 2007 - Ontario, Canada

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Nic |

Hey! It's a fellow NF Runner across the pond in Wisconsin. I LOVE the website, and want to set one up for Team Wisconsin! It's wonderful, this team! 19 April 2007 - Plymouth, WI

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Sara |

Hello I am a mother of 4 boys all with nf 1 and I live in phoenix if you don't know CRS at St Joes on Thomas and about 3 ave is great help. 17 April 2007 - phoenix az

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Kelly |

Thanks again for all your support 28 March 2007 - Phx., AZ

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Sharon and Ned Welker |

We have a little charm on our coat that we wear when we run with the NF marathon team, and the charm reads, "Hope is necessary for life". And we truly believe that. Shannon is a beautiful girl, and we have hope that NF will be cured soon for Shannon and all the other wonderful HF heroes!! 8 March 2007 - Prescott, Arizona

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Crystal Stapel |

What a great site! I can't wait for my next opportunity to meet up with the Mighty NF Team. Thanks for a wonderful time in Phoenix see you guys in San Diego and Vegas. 23 February 2007 - Bellingham, WA

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angel cummings |

Intresting material, nice to have more info 14 February 2007 - NEW MARKET ALABAMA

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Chaun Steiner |

Great website and fundraising and awareness efforts! My wife and both kids have NF1. Our oldest son (3) has an optic glioma and congenital pseudoarthrosis of the tibia. He's currently undergoing chemotherapy. Best Wishes! 8 February 2007 - Toledo, Ohio

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Melisa Callison |

This was my 3rd half marathon. I improved my finish time by 4mins 35 sec. This was my first event with the team, or any team for that matter. It was a wonderful experience and the course support was great. I have NF and it was wonderful to run for those who can't. I would never be able to run a half marathon without my Cheetah Leg. I do hope to see everyone in Nashville, Philly, Virginia Beach, and San Jose. I am considering doing the full marathon in San Diego, 6 months ahead of CIM (California International Marathon)in Sacramento which is supposed to be my first full. I see now it is the same day as Vegas, oh no!! I want to collect the Elite Racing medal series and become a rock star. San Diego is my biggest obstacle since they do not have a half marathon that is open to those who are not alumni of the wonderful purple shirt team. Please keep in touch with me and I will do the same. God Bless you all!! 2 February 2007 - West Sacramento, CA

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Ruth Gorski |

I had a wonderful time rocking in phoenix! I finished my first half marathon! I also suffer from nf and i feel by doing this marathon i made a difference for all of us affected with this disorder. Thanks for great photos!!! I'll be speaking to my Rotary Club next month so some of the photos will be great!!! Thanks for them. 1 February 2007 - TUNKHANNOCK,

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Cindy S. Little |

Hello! I am 44 yrs old and I have NF1, I'll make a long story short. I have had tumors on the outer part of my body now, close to 17 yrs. I knew that it could happen,and during my pregnancy it hit like a hurrican, BAM they were there. My daughter has them under the skin and we have told her that she shouldn't have children or she will look like I do, and like my mom did. I just needed to talk to someone, there is more to it, but I feel so all alone right now, and not willing to talk about it. Yes I am on depression meds., it's just something happened today rather didn't, and now I want to cry. Cindy 30 January 2007 - California

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Brian |

i have nf too i go to the doc alot 29 January 2007 - CA

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Kelly |

Hi Deb and Dan. What a pleasure it was getting better aquainted with you. Feel free to visit Arizona and stay with us. You two are awesome. Thanks for doing what you do. 23 January 2007

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Kelly

Hi Pete-Thanks for coming out and running. It was a blast to run/walk and visit with so many wonderful people. It's people like you that make a BIG difference. Hope to see you in Vegas. 22 January 2007

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Pete (Hawkeye) |

Hi Kelly and Shannon, It was wonderful seeing you again last weekend. What a joy it was to run for such a wonderful person as yourself. I will continue to run for you and others who have NF. Remember you have more friends out here than you realize. Keep a postive attitude, life is great.See you again at another run. Your friend, Pete 21 January 2007 - Shelby Twp., Mich

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Lara Thompson |

I'm glad I visited this site. I have NF and just recently had 3 neurofibromas removed. I did not know there was a marathon to raise money for NF. That will be my first marathon. 21 January 2007 - Sacramento, CA

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