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NAF coordinates Support Groups as a way for the Ataxia to connect and learn from others. There are more than 65 support groups and hundreds of meetings each year. Our volunteer Support Group Leaders provide this invaluable service to the community. There are in-person and virtual meeting options that vary by group.
Our events calendar has up-to-date information about upcoming meetings. Feel free to join a virtual meeting, even if the support group is not in your area. To find a local support group, use the map below. Contact the Support Group Leader for more information about that group.
In a continued effort to protect our Ataxia community, we’ve been monitoring the news about COVID-19. We have also been in contact with members of NAF’s Medical Research Advisory Board (MRAB). An important note that supersedes any specific NAF policy: Local regulations vary by city/county/state, so please follow any local regulations in regard to in-person meetings.
At this time, NAF recommends the following for in-person support group meetings:
Select your state to reveal contact information for Support Groups in your area. If there are no Support Groups in your area, try one of our virtual support group options.
(To view an accessible version of this map, please go to the Accessible Support Groups page.)
Interested in volunteering as a Support Group Leader or Co-Leader?
Contact Sarah Pilato, NAF’s Program Coordinator, at sarah@ataxia.org.
Susan Harding
Stittsville, Ontario
Phone #: 613-435-3791
E-mail: susangmharding@gmail.com
Facebook Group: Ottawa Support Group
Amy DeLeon
E-mail: amy@hopeforataxia.org
Facebook Group: HFA community
Sajjad Haider
Karachi, Pakistan 0092
Phone #: 300- 828-1784
E-mail: sajjadhaiderb@hotmail.com
This is an online group for anyone affected by Ataxia. Persons with Ataxia, friends, and family members are all welcome!
Facebook Group: NAF Community
You must have Ataxia yourself and be ages 16-30 to join this group. Parents/Spouses/Friends of people with Ataxia are not permitted.
Shelby Davenport
E-mail: shelbidavenport2020@gmail.com
Facebook Group: Under 30 With Ataxia
This group is for spouses and partners without Ataxia who have a spouse or partner with Ataxia. This is our spot to learn from one another, vent, have fun, and discuss topics important to us!
Dana Mauro
E-mail: ataxiafacts@gmail.com
Facebook Group: Spouses and Partners
This group is for parents who have a child who has Ataxia. This is our spot to learn from one another, vent, have fun, and discuss topics important to us!
Stephanie Leonard
E-mail: stephanie_q007@yahoo.com
Facebook Group:
Parents of Kids With Ataxia
This group is for African-Americans with Ataxia to connect with each other to share resources and experiences.
Letitia Diggs
E-mail: Letitia.diggs@iCloud.com
Phone #: 202-386-8289
Veronica Denis
Email: aaataxia@gmail.com
Facebook Group: African Americans with Ataxia
This group is for Military & Veteran members who have been diagnosed with some form/type of Ataxia. This Team Room is a platform to share experiences and information related to Ataxia, as well as provide support, education, awareness, and discuss personal observations with each other to learn and become aware of how Ataxia affects individuals. ***Note*** This Team Room is also used to initiate (with members permission) a database of names and stories of how individuals became affected and to study if there is any correlation of what, if anything, we did, or environments we were exposed to during our military tenure, that caused symptoms to appear in persons with hereditary Ataxia’s or to cause Acquired Ataxias.
Mike DeRosa
E-mail: derosam2004@yahoo.com
Phone #: 919-478-5906
Facebook Group: Military Members with Ataxia
Susan Stiles
E-mail: sstiles12@gmail.com
Facebook Group: Ataxia Resources and Discussion Group
Kristy Taylor
E-mail: lasvegasataxia@gmail.com
Daniel Gavern
E-mail: dkgavern@gmail.com
Facebook Group: 30-55 with Ataxia
See what the Support Groups have been up to with the latest Support Group updates.
We are always looking for volunteers to be an ambassador or Support Group Leader. Email Lori Shogren, Community Program and Services Director, at lori@ataxia.org for more information.
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
501(c)(3)
EIN 41-0832903
Mailing Address:
PO Box 27986
Golden Valley, MN 55427
Physical Address:
600 Highway 169 South
Suite 1725
Minneapolis, MN 55426
763-553-0020
763-553-0167 (Fax)
