Our History, Our Goals
The Neurofibromatosis Support Group of West Michigan was founded in January, 1985 by Sue DeGroot, MSW, a social worker at Spectrum Health in Grand Rapids. We are now called NF Michigan or Neurofibromatosis Michigan. Of the 45 people who attended the first meeting, most had little or no information about NF or were misinformed. Nearly everyone thought it was a rare disease, and theirs was the only family they knew affected by it. Today we know that NF affects one in every 2,500-3,000 births and is the most common genetic disorder affecting the nervous system.
The support group was turned over to the members in 1986. It continues to meet regularly for educational meetings, social events and fundraising events. The annual picnic (late July) and Christmas Party (first Saturday in December) are both popular annual events. Several coffee chats per year are scheduled in various Michigan locations.
Educational materials are provided free to NF individuals and families. Our Facebook group, website and email communications keep the membership informed of group activities, research developments, available services, and more. A small number of print newsletters are available for those who do not have reliable internet access.
It is stressful, even frightening, to have a family member diagnosed with a genetic disorder. NF Michigan wants every person and family affected by NF to have somewhere to call for information and someone to talk to. No one should feel alone in dealing with these concerns.
The goals established for the group back in 1988 are still valid and viable 25 years later. Our goals are:
1. To provide emotional support for persons affected and their families.
2. To assist NF families in getting appropriate medical care.
3. To educate ourselves and the public about NF.
4. To assist the medical community in better recognizing and diagnosing NF.
5. To encourage research through participation and, for those able, through financial contributions.