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. 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. Families come to meetings from Kalamazoo, Holland, Muskegon and parts in between, as well as from Grand Rapids. The annual picnic (last Sunday in July) and Christmas Party (first Saturday in December) are both popular events.

Educational materials are provided free to NF individuals and families and to their physicians, teachers, social workers, etc. Newsletters and email messages keep the membership informed of group activities, research developments, available services, and more. The support group is particularly proud of the NF Clinic which opened in 1989 - the only NF Clinic on the west side of Michigan. It is now located at Spectrum Health's Butterworth Campus.

It is extremely stressful, even frightening, to have a family member diagnosed with a genetic disorder. The support group 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 support group in 1988 are still valid and viable more than 20 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.