IN - Gabriel Helpingstine PDF Print E-mail

Gabriel was diagnosed with neurofibromatosis (Type 1) at the age of two. This disorder can cause tumors to grow along the nervous system (including in the brain, on cranial nerves and/or on the spinal cord), bone enlargements or deformities, scoliosis and learning disabilities. He has already been through more medical tests and exams in two years than most people can expect in their lifetime. So far we have been blessed with positive outcomes, however there is no way to foresee what the future holds for him. This is an unpredictable and progressive disorder. We were told that his genetic mutation of the 17th chromosome was extremely rare.

As we started researching and looking for answers, we have learned that this is actually one of the most common genetic disorders in the United States and the most common neurological disorder caused by a single gene. In fact, it is even more prevalent than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined! With it being so common, how had we not heard of this before? Why didn’t we know the symptoms and where to get help? Why are we searching so long and hard for answers?

It turns out not much is still known about Neurofibromatosis (NF) compared to other disorders. The Children’s Tumor Foundation, a non-profit 501(c)(3) medical foundation, began NF research over 20 years ago and has already made great progress. However, there is still a long way to go. The money raised through Racing4Research will fund their Drug Discovery Initiative program to increase the number of candidate NF drugs being tested, and therefore to increase the chances that we will find therapies to treat the tumors, bone abnormalities, learning disabilities and other manifestations of NF.

We are asking for help in raising money for the Children’s Tumor Foundation. Research could benefit not only the more than 100,000 Americans diagnosed with Neurofibromatosis, but also another 100 million Americans—65 million with cancer and 35 million with learning disabilities. Think of how many people worldwide this could help! Thank you for all of your help!



 
 

Our NF Heroes

SC - Nicholas Biering

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If you are reading this page, you probably already know who I am, but just in case…. My name is Nicholas Bier...

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CA - Dakota Anderson

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Dakota was suspected of having NF1 at 2 months old when the doctor noticed her cafe au lait spots. She was officially di...

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GA - Jocelyn Cantrell

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This website is in honor of my beautiful daughter, Jocelyn. At the age of four she was diagnosed with neurofibromatosis...

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MO - Nicole Riley

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Nicole was diagnosed with a large Plexiform tumor in her lower abdomen and legs on her first birthday. There is the good...

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FL - Dylan Brain

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On April 15, 2009, 6:30 pm our lives were changed forever. An MRI showed that our 3 year old son (two at that time) Dyla...

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MN - Jacqueline Dunlap

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The Wednesday before Thanksgiving of 2008 was the day we received a call from our daughter’s Pediatrician tell...

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VA - Jamie Yowell

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My name is Jamie and I am 14 years old. I have NF 1. I have a large neurofibroma wrapped around my airway that is com...

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OH - Bryce Gossard

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Wow, what a great day we had on May 23, 2010 at the Family Fun Day and Car Show on behalf of Bryce in Kenton, Ohio. Ther...

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UT - Kala Schvaneveldt

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My name is Kala Schvaneveldt. I am 16 years old, and when I was 7 years old I was diagnosed with neurofibromatosis type ...

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GA - Katherine Thompson

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I want to thank everyone for visiting this site to become more educated regarding neurofibromatosis (NF). Just over t...

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AL - Mariska Wallis

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Hi my name is Kristy and I'm raising funds for NF. The reason being my 3 year old god-daughter was diagnosed with&n...

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NV - Cailin Devine

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Developed by the Children’s Tumor Foundation, Racing4Research raises money to benefit NF research through corpo...

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