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Leigh syndrome is a rare, neurodegenerative disorder caused by defects in the mitochondria, the energy-producing structures within our cells. This disorder often begins in infancy or early childhood and causes…

Holiday traditions are a special way to create meaningful memories while also making the busy holiday season a little happier and brighter. Celebrating special traditions, either on your own or…

Wendi Dressen, Senior Director of MDA Volunteer Programs As 2023 draws to a close, we look back on the many opportunities that we have had to recognize, appreciate, and celebrate…

Amy Shinneman speaking at the MDA Clinical and Scientific conference In some ways it seems the last two years have flown by, and I was just barely getting started serving…

During this season of Thanksgiving, and throughout The Year of the Volunteer, MDA strives to acknowledge and honor the incredible impact our volunteers have on the families we serve. MDA’s…

As we approach the end of another year, the MDA Advocacy Team provides a recap of some of the most significant developments and expected changes with federal financial benefit programs…

See the winning reader photos from the 2023 Quest Media Photo Contest.

Emily Blume shares her diagnostic journey discovering how she inherited and how to live with myotonic dystrophy (MD).

When doctors don’t know what you have, ask your healthcare providers these important questions to help them get to a diagnosis.

Genetic testing and family planning can help parents understand risks of inherited diseases, prepare for them, and take action if they choose to.