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Support Groups

Providing a variety of ways to connect with others affected by Ataxia.

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-Person Support Group Meeting Policy

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:

  • Indoor in-person meetings can be held at this time without restrictions for those that are fully vaccinated. Those that are not fully vaccinated are encouraged to follow COVID-19 safety measures (wear a mask, maintain social distance), and strongly consider getting vaccinated. 
  • Outdoor in-person meetings and events can continue to be held without restrictions.
  • Please consider holding virtual or hybrid meetings for those not yet comfortable meeting in-person or who have not yet had the opportunity to get vaccinated.

US Support Groups & Ambassadors

Select your state to reveal contact information for Support Groups and Ambassadors in your area. If there are no Support Groups in your area, try one of our virtual support group options.

International Support Groups & Ambassadors

Canada

Ottawa Support Group Leader

Prentis Clairmont
Ottawa, Ontario
Phone #: 613-864-8545
E-mail: prentis.clairmont@gmail.com
Facebook Group: Ottawa Support Group

Global Ataxia Support Group Leader

Mark Desa
Mississauga, Ontario
Phone #: 416-418-2475
E-mail: mark@hopeforataxia.org
Facebook Group: HFA community

Pakistan Ambassador

Sajjad Haider
Karachi, Pakistan 0092
Phone #: 300- 828-1784
E-mail: sajjadhaiderb@hotmail.com

Facebook Support Groups

NAF Community Ataxia Support Group

This is an online group for anyone affected by Ataxia. Persons with Ataxia, friends, and family members are all welcome!

Facebook Group: NAF Community

Under 30 with Ataxia Support Group

You must have Ataxia yourself and be ages 16-30 to join this group. Parents/Spouses/Friends of people with Ataxia are not permitted.

Lauren Sormani
Washington, DC
Phone: 908-577-6245
E-mail:
lasormani@gmail.com
Facebook Group:
Under 30 With Ataxia

Spouses and Partners of Loved Ones with Ataxia Support Group

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

Parents of Kids with Ataxia Support Group

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

 

African Americans with Ataxia Support Group

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
Facebook Group:
African Americans with Ataxia

U-MATTER, Unbroken - Military Members with Ataxia Talking Team Room

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

Interested in starting an Ataxia Support Group in your community?

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. 

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