Jett Foundation Visits Tarheel State for Family Workshop

June 4, 2024

Making our way up the east coast, the Jett team stopped in Charlotte, North Carolina on May 4 to share educational presentations and an abundance of resources with individuals and families impacted by Duchenne muscular dystrophy. Also joining us in Charlotte were pharmaceutical companies to answer questions about clinical trials, an important research method of evaluating treatments and medication for Duchenne.

Among our speakers was Michael Riley (42), who shared his perspective as an individual living with Duchenne muscular dystrophy. Michael shared, “Though Duchenne has caused many challenges for me, my most recent struggle was more mental than physical. I experienced my first public depression of my life, which lasted about two years. When it surfaced, I started feeling like I didn’t want to be here anymore.”

Michael continued, “But I have grown to have a positively optimistic view on life, even after the challenges that Duchenne and relationships have caused. Like everyone else, I can occasionally have bad days. Having a disability can be tough, but we can’t let that stop us from doing what we love.”

We are grateful to Michael Riley for sharing his story in Charlotte and allowing us to utilize his story to help others in the Duchenne community.

We also heard from Dr. Urvi Desai, Director of the Carolinas MDA Care Center and Professor of Neurology at Wake Forest University School of Medicine, on newer gene therapies; Dr. Maria Dorotan-Guevara presented on female carriers in Duchenne; Dr. Ashley Chadha spoke about respiratory support equipment; and Mariana Livingston presented on assistive technology.

A recording of all Charlotte workshop presentations can be viewed on our YouTube channel by clicking here.

Jett Foundation plans to visit Harrisburg, Pennsylvania and Iowa City, Iowa for Family Workshops this fall. More details and registration are coming soon to our website.

You can help us to support families in the Duchenne community! Donate today or learn more about becoming a sponsor of our direct service programs by emailing [email protected].

Thank you to our 2024 Family Workshop sponsors:

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How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.

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