Step Up for NF - St Paul (2018)

Step Up for NF is an annual fundraising walk, and funds raised from the event help NF Upper Midwest:

• Provide financial assistance to individuals with NF who are facing NF-related issues or emergencies
• Sponsor kids with NF to attend a residential camp for children and families with chronic health conditions
• Award grants to attend NF-related conferences
• Host informational forums on relevant topics
• Lobby to ensure continued federal funding of NF-related research

Event Info

Step Up For NF walk is an approximately 2 mile at Como Park, and will he on May 5th from 9:00 am to 1;00 PM andw 2018 will mark our 8th annual  walk in St. Paul. In addition to the walk, the event will host kids activities, a raffle basket fundraiser, and lunch. It promises to be a fun time for the whole family! It's also a great opportunity to meet other local families affected by neurofibromatosis!

What is 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. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births).  Neurofibromatosis affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

NF has three genetically distinct forms: NF-1, NF-2, and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.