Friedreich's Ataxia Parents' Group

Links to FA Research Organizations

Friedreich's Ataxia Research Alliance

National Ataxia Foundation

Seek A Miracle MDA

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 two resources:
1. A Message for Newly Diagnosed Patients and their Families on the FARA website and 2. Parents of Recently Diagnosed Ataxians presented at the 2003 NAF Conference.

Video Link of "Keeping Kids Healthy", featuring three families and their children who have FA.

Invitation to Join Our Support Group

If you are a parent of a child with FA or undiagnosed ataxia and would like to join our free email support group, follow the instructions on the subscribe page.

Page last updated: 06 May 2008

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 in xxxxxx. 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!"

Contact for FAPG list and website:

Sue Kittel
fapginfo@fortnet.org
Loveland, Colorado
USA

Important Ataxia Related Dates

Upcoming Fundraisers for FA Research

International Ataxia Awareness Day
September 25, 2008

Spring 2009: The next Annual NAF Membership Meeting will be held March 20 - 22, 2009 at the Doubletree Hotel, Seattle, Washington Airport www.seattleairport.doubletree.com
1-800-222-tree. Call Lori at NAF if you need to reserve an ADA room, 763.553.0020.

        FA Parents Group History
                and Introduction

In September of 1997, a small group of FA parents began a mailing list to share questions, support and information about Friedreich's ataxia. Our online support group, FAPG, has grown to an international list that now includes parents of other childhood-onset ataxias.   E-mail 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 parents to share our unique experiences and knowledge of how we've learned to cope with ataxia in our family.