7th Annual Great Steps Neurofibromatosis Walk to raise awareness, research funds

FORT WAYNE, Ind. (WANE) – With 12 Clinics in six states, Neurofibromatosis Midwest is committed to improving the lives of children, adults, and families impacted by the disorder. They focus on awareness, research, education and support surrounding NF. Right now, they are gearing up for the 7th Annual Great Steps Neurofibromatosis Walk at Parkview Field.

Libby Huffer, a member of NF Midwest and the administrator of the group Faces of Neurofibromatosis, joined First News Saturday.

NF is a complex, often devastating set of genetic disorders with possible complications throughout the entire body that may also hold the genetic mystery to a host of other human ailments. Affecting approximately 1 in 2,500 people or 2 million people worldwide, it appears equally in all races, ethnic groups and both sexes. A common complication for a person with NF is the growth of tumors on the nerves anywhere in and on the body. There are currently several separate, distinct disorders classified as neurofibromatosis. This includes neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis. Others are also being identified.

There has been a lot of research on the subject. NF Midwest helps to advocate for federal research dollars which is now over $300 million since 1996. They also support clinical trials in our region and personal fund research.

Register for the walk as soon as possible so organizers know how many t-shirts, volunteers and food to have. Just form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join (just have team name before registering.)

Next create a fundraising page to start raising funds and awareness for NF. Ask your co-workers and neighbors to help you reach your goals. Printable forms will give you everything you need to get started.

The Great Steps NF walk is September 16th at Parkview Field. You can register online here.