I'm an educator. Once diagnosed it was vital to learn as much about the disease, what I could do to maintain optimal health, and how I could help educate others with a similar condition. For 17 years I facilitated in-person support groups for the Muscular Dystrophy Association. Then as Outreach Director for the Myotonic Dystrophy Foundation I created a network of support groups across the US, Canada, and Europe and trained patients and caregivers to serve as support group facilitators. In the past 3 years I've produced a podcast series, Glass Half Full. Podcast episodes focus on positivity -- how people with chronic health condition and/or disability, and caregivers, can live the best life possible. I continue my social media learning with a YouTube channel, Facebook group, and Twitter and Instagram accounts.
I’m a Patient Leader