SRNA Volunteer Raises Awareness in Ontario

On March 11, 2023, Western University in London, Ontario, Canada, held a Rare Disease Conference titled “Building A Rare Community” in recognition of Rare Disease Day. SRNA Peer Connect Leader, Paul Garrett and his wife, Brenda Martin, were invited to present to an audience that included physicians, researchers, and students entitled “Transverse Myelitis: A Rare Journey.”

Paul shared his story – from acute onset and diagnosis, and from wheelchair to walker – and Brenda gave an overview of Transverse Myelitis (TM), what the treatments are, and the impact it has on both patients and caregivers. Paul also presented his goal: to raise awareness of TM and related diseases and create a borderless community that encourages shared knowledge worldwide within the health care communities and those who live with these diseases.

Brenda and Paul kindly shared their advice for others looking to raise awareness:

1. Reach out to the community, don’t wait for them to contact you. We have become members of committees and research initiatives at our local healthcare facility and university (which has a large medical school), and this has enabled us to make them aware of our mission (raising awareness/building a borderless community). That’s how we were contacted to present at the Rare Disease Day event. And Paul has joined community organizations like Spinal Cord Injury Ontario (SCIO) and, of course, SRNA. The more you immerse yourself in the community and volunteer your time, the greater the opportunity you have to raise awareness.

2. Share. Share. Share. Tell your story anywhere you can: blogs, social media, service clubs (like Kiwanis or Rotary), dinner parties (word of caution there… don’t go on ad nauseum or you might not get invited back!). For example, since we both follow SRNA, when we see a post that resonates with us, we share it. You never know who is going to see it. It might inspire someone who is (a) struggling alone and wasn’t aware of SRNA’s robust community, or (b) considering a specialty, and your post inspires them to get into neurology or physiotherapy or related research. The spectrum is broad, and the opportunity is there if you share.

3. Hold an event! If you have a good support network, get them involved! We haven’t done this yet, but we hope to in the future. Create a walking challenge (so many steps a day for a month), or a walk ’n roll event to raise funds for SRNA, or just get out there and wave that banner!