Support Group Meetings and Peer Connect

SRNA’s tagline is “Connect. Care. Cure.” We embody the first tenet, connect, through our Support Group Meetings and Peer Connect Program. Through these programs, the rare neuroimmune community relates to one another and finds support with the help of our volunteer leaders.

So far this year, over 100 attendees joined us for 20 Support Group Meetings, with guest speakers who joined us to cover topics like physical therapy, mental health, bowel and bladder issues, finding resources and more. This spring, we began offering two new types of meetings – for those in Europe and for young adults.

“I attended [a support group meeting] because I wanted to speak with others who have dealt with TM. It was awesome to receive validation on my experiences with the disease and to know I am not alone in this journey.”

After launching the Peer Connect Program (PCP) in December, 2021, it was exciting to begin the new year with this program. Our first cohort of volunteers were onboarded in November 2021 and the second cohort of volunteers joined us in March 2022. To date, our 18 Peer Connect Leaders have had 117 total connections with 43 people seeking support.

One participant explained the importance of these connections. “I found it great to talk to someone who had been through something similar to me, as TM is such a rare disease I’m unlikely to ever meet someone in person with the condition! I don’t need it to be a regular conversation, but as a one-off, I found it very therapeutic and comforting, and it made me feel hopeful for the first time in a long time. Thank you.”

To learn more about Support Groups and Peer Connect, click here.