Global Ataxia Support Group

Frequently Asked Questions

• Why do you host these meetings?

  We know it’s difficult to get to a local Ataxia support group. Maybe there isn’t one where you are. Maybe it’s not possible for you to attend the one in your area. Whatever the reason, we’re here to help!

  Our Global Ataxia Support Groups (or teleconferences) are also a great way to connect with the international Ataxia community. They are an opportunity for those with Ataxia to talk about their experience, ask questions, and connect with others with similar challenges.

• Who can attend the meetings?

  Of course, meetings are open to everyone with Ataxia.

  We also know there are often questions from friends, family, and maybe caregivers too. All are welcome who are interested in learning more about the disease.

• How do these Ataxia support groups work?

  We host regular Ataxia Support Group sessions via Zoom.

  It is a forum where we can discuss our symptoms, educate others on Ataxia, and generally offer support.

  On occasion, we are able to arrange speakers for some sessions. When we confirm them, we send out notices on our social media accounts. Please follow us for more up-to-date info.

• I've never been in this group. Are there any rules or guidelines?

  To ensure a good experience for everyone, we ask that you abide by a few guidelines:

  • Respect others’ experiences and refrain from judging them. We want to make this a safe and inviting space for everyone.
  • If you wish to speak, please raise your hand or message on the chat window of each meeting. There may be quite a few attendees and we want to give everyone a chance to be heard.
  • Refrain from giving advice. Instead, you are encouraged to say “I had a similar situation and what helped me was…” or something like that.
  • We try to limit the meeting capacity to 20 people. We’ve done this because communication may be difficult with too many people and not everyone may get a chance to speak.  Now that you have registered, your place has been reserved. If you don’t show up, someone else will miss out. You can always email me to let me know something has come up.
  • If you have registered, please show up. We understand that things come up and sometimes you may forget, but remember we’re putting a lot of work into making these teleconferences a success. At some of these meetings, we may have speakers booked. Their time is very valuable and they could certainly be doing other things. But, they have made a commitment to us and will honour it. We must show the same courtesy.
• How often are these support meetings? When is the next meeting?

  We host a weekly support group meeting.

  There are also special speaker sessions on occasion. These aren’t as frequent to allow us to coordinate, plan, get speakers, and try to make it a great experience.

  We have some options for you! Click any one of the links below to register.