FA Parents Group History and Introduction
In September of 1997, a small group of FA parents had been coming together via email to share questions, support and information about Friedreich's Ataxia. Since then, our online support group, FAPG, has grown to an international group that now includes parents and guardians of children with other childhood-onset ataxias. Email is a great forum for support and has remedied the isolation and loneliness many of us feel dealing with the challenges of raising children with these degenerative diseases. This website provides another forum for us to share our unique experiences and knowledge of how we've learned to cope with ataxia in our family.
If you are the parent of a child with FA or an undiagnosed ataxia, we invite you to join our free email support group. Fill out and submit the form on the membership request page.
We welcome you to explore this site to learn about other families like yours!
Are You the Parent of a Newly Diagnosed Child?
If you would like to view resources for families with a newly diagnosed child check out these resources:
A Parent's Perspective:
"My daughter was diagnosed at 15. She has managed much better than I expected. Life with FA is what she knows, and although she sees her friends doing things differently than she does, I really am not sure she would change places with any of them. She is nearly 29 now. She is living with her service dog in a small house. She has completed high school and college, and lived on her own since then. She has written a novel and is working on a second and she took up painting and has done several for friends. She loves and is loved by a batch of friends across the country. She has made a difference, making sure services for the disabled are working the way they should. She's a pretty powerful force, when she chooses. There are better possibilities for our kids than many neurologists might have us believe. This isn't a death sentence. It will complicate some areas of your life, but it may also bring to you awareness of blessings you might have overlooked. On some days, I feel pretty OK about where we all are. On some days, I am in a pit! FAPG is the one place you can come and share whatever feelings you are having on any particular day, and someone in this group will reach out a hand and open a heart and hold your feelings with understanding and compassion. My advice for the moment is just take the smallest bit of this that you can handle for now. You don't have to learn everything this moment. You have time to absorb this and learn what you will want to know. Welcome to the best group you never wanted to belong to! We are here for you!"
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