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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:
22 June 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.
Information and Support for Friedreich's
Ataxia
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