NF Upper Midwest is dedicated to supporting the Minnesota, North Dakota, and South Dakota neurofibromatosis communities
NF Upper Midwest is dedicated to supporting the Minnesota, North Dakota, and South Dakota NF communities by raising awareness, education, and support for those affected by neurofibromatosis.
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. 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. Yet, NF is less well-known by the public, making our efforts to increase awareness even more essential. NF Upper Midwest is a key player in providing advocacy and education for NF. NF Upper Midwest meets with our elected officials in Washington, helping to secure funding for research on NF. With your support, we are planning on strengthening our advocacy work in 2015, better leveraging our efforts to help find a cure for NF.
For our local NF community, we host informational forums on relevant topics, provide information and referral, sponsor kids to go to NF camp, award grants to attend NF related conferences, offer financial assistance to individuals or to family member with NF to assist with issues or emergencies related to NF, and lobby to ensure continued federal funding of NF related research.