About the FG Syndrome Family Alliance, Inc.
The FG Syndrome Family Alliance, Inc. is a true grassroots organization. It was formed through the work of families around the world who have loved ones with FG Syndrome. It began in 1996 with about five families, and now our network extends to hundreds of active families. The FGSFA, Inc. is a non-profit organization under Section 501c3 of the Internal Revenue code.
All work for the FGSFA, Inc. is done through the generous work of volunteers. Newsletters, the family album, brochures, electronic resources, family support services, conference planning, and other activities are the result of literally hundreds upon hundreds of volunteer hours. We are always open to new ideas, and greet new volunteers with open arms! We have been very fortunate to have the donated time of professionals to help us with the “business” end of our work.
We publish a quarterly print newsletter, host an active listserv, produce informational materials for families, educators and medical professionals, act as liaisons between families and the scientific community, arrange for group clinic opportunities and sponsor international family and scientific conferences. If you are interested in being involved with the FG Syndrome Family Alliance, please contact us.
The internet has allowed us to get to know each other well. Even though we are spread throughout the world, many of us count other FG Families among our closest friends and confidants. The listserv allows us to have constant contact with one another, and enables us to share new ideas and support with each other.
The organization is led by a volunteer Board of Directors. The Board is diverse, both geographically and in the variety of ways FG Syndrome has impacted their families. All Board members are open to communication from others who have questions or experience with FG Syndrome.
Our current Board of Directors includes: