By Jeremy Bennett, Community Partnerships Manager
Before I became the Community Partnerships Manager for the Transverse Myelitis Association in October, I was a Support Group Leader for Central Ohio. I started a support group because I didn’t know anyone else with transverse myelitis. I was diagnosed with TM in 2012 and, like many, I often felt like I was the only person in the world who understood what it was like to live with a rare neuroimmune disorder. Then I met Sandy and Pauline.
Sandy and Pauline invited me to dinner and I’ll never forget that night. Pauline was the first person I met who had TM. It had taken me five years to come face-to-face with another person like me. I left that restaurant wondering why I hadn’t done something sooner, but determined to connect as many people with TM, ADEM, NMO, ON, and AFM as possible. Now that I have that chance, I’m encouraging our members to help.
My first month working for SRNA included going to Dallas for a Walk-Run-N-Roll event and attending the 2017 Rare Neuroimmune Disorders Symposium in Columbus, Ohio. I went from knowing no one with transverse myelitis to meeting more than 100 people in less than six months. Of course, that’s not going to be everyone’s experience, but what I can say is that it doesn’t matter if it’s one, five, 20, or 500 people – each interaction is special.
One of my goals for 2018 is to grow our Support Group Network. SRNA has nearly 13,000 members, many of whom are looking to make that first connection. We have active support groups in a few states and countries that are doing tremendous jobs, but there is a need for more. If you are interested in starting a support group in your area, visit our website and fill out a Volunteer Application Form.
To a lot of the world, transverse myelitis doesn’t mean much, but for those who have it, it means the world. Help us provide support to our members by becoming a Support Group Leader today.
For more information, you can contact me at email@example.com.