Myotonic Muscular Dystrophy

(MMD, Steinert disease, dystrophia myotonica)

MDA leads the search for treatments and therapies for myotonic muscular dystrophy (MMD). The Association also provides comprehensive supports and expert clinical care for those living with MMD.

In this section, you’ll find up-to-date information about myotonic muscular dystrophy, as well as many helpful resources. This information has been compiled with input from researchers, physicians and people affected by the disease.

This website contains information about the three known types of myotonic muscular dystrophy:

  • adult-onset MMD1 and MMD2
  • juvenile-onset MMD1
  • congenital-onset MMD1

As you learn more about MMD, always remember that you’re not alone. MDA is here for you and your family, standing ready to provide help and hope. There is a place for you in the MDA MMD community.

MDA provides support by:

Once you sign up with your local MDA office, you’ll begin receiving MDA’s quarterly Quest magazine, where you’ll find news about research and health care, helpful products and devices, social and family issues, and more.

In addition, MDA will keep you informed through e-alerts, educational publications and speakers, seminars, videos and newsletters.

Please know that there’s a role for you in the fight against myotonic muscular dystrophy. The MDA community is strong and dedicated, with opportunities for involvement at all levels, such as:

  • connecting with others affected by MMD;
  • being an advocate;
  • enrolling in disease registries and clinical trials;
  • participating in community awareness and fundraising events;
  • and much more.

Please know that there’s an important role for every member of the MMD community. We urge you to contact your local MDA office to learn more.

An MMD diagnosis doesn’t mean an end to your hopes and dreams. Changes, challenges and adaptations lay ahead, but also opportunity, fulfillment, joy and hope for a future free of myotonic muscular dystrophy. 

Never forget that MDA is here to help.