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About our nonprofit:
Neurofibromatosis Inc
Neurofibromatosis is a genetic disorder that can cause tumors to form on the nerves anywhere in or on the body at any time. NF is associated with disfigurement, learning disabilities, deafness, vision impairment,...
Neurofibromatosis is a genetic disorder that can cause tumors to form on the nerves anywhere in or on the body at any time. NF is associated with disfigurement, learning disabilities, deafness, vision impairment, epilepsy and cancer. At this time, there is no effective treatment or cure for NF. NF affects three times as many people as muscular dystrophy and cystic fibrosis combined, yet many people have never even heard of it. We need to change that! The mission of Neurofibromatosis, Inc. is to find the cure for NF by promoting scientific research, creating awareness, and supporting those who are affected by NF. Thank you for helping us by contributing through this fund raising page. NF, Inc. is a 501(c)(3) tax exempt organization. For more information visit our website at www.nfinc.org.
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Fundraising target:
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$1,000
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So far we have raised:
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$75.00
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Hello Everyone! Thank you for visiting my fundraising page!
Below are some key facts about why NF is so important to me…
Neurofibromatosis (NF)-
- Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time.
- NF has two genetically distinct forms: NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity.
Affects of NF-
- At age 7- I had my first surgery to remove a tumor and have been a full time patient ever since.
- At age 15- I was officially diagnosed with NF2 by the horrifying discovery of 2 large acoustic neuromas compressing my brainstem. As a result from removing the larger of the neuromas I became deafened in my left ear.
- Last year I had to choose to give up the rest of my hearing to save my life, with the removal of the acoustic neuroma on the right side of my brain and a tumor located on my brainstem.
- I have had over 20 surgeries and currently preparing for more.
- NF has affected my balance, my vision, and has taken my hearing.
Did you know that every day 115 babies are born in this world with Neurofibromatosis? Yet we do not have cures or many treatments for NF. There are many hopes of cures across the U.S.
Will you help in the fight for a cure?
On May 9th I am going to participate in the 5k River Bank Run (Grand Rapids, MI) with the support of my family and friends, to insure government funding and private research of NF. I'm the first to admit, I'm not a runner, but I am living with NF. Help me fight for a cure!
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for visiting my page and your support -- and don't forget to forward this to anyone who you think might want to donate too!
Peace, Love, Rock on!
Jessica Stone
“Life Inspires Me”
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