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The Valek Family: A Spouse Becomes a Patient Advocate

In the decade since Karl Valek was diagnosed with DM1, his wife Carolyn has stepped in as his full-time medical case manager, even going so far as to earn a graduate certificate in patient advocacy to better help her family. Read their story.

With Trust Comes Strength

Mike Hamlin learned that he had DM in 2007. After retiring, he volunteered with members of the local DM community in Washington, DC, to launch an MDF support group. We asked Mike to tell us about his experience. Read more.

Wanted: Your Family Members for the 2015 Grandparents Campaign

Are you a parent or grandparent of a child with DM? Has your family looked for ways to raise awareness and funds, but you've come up short on ideas or even time? The Grandparents Campaign is the perfect opportunity to become part of the community and help us raise the profile of DM and MDF among your network. It's easy: we'll work with you to create cards that feature your family's story and photo, and help you raise critically-needed funds for DM research and programs. Learn more and sign up today!

MDF Conference: Find Community With Us!

How do we live in the present while working toward a future where every person in our community has the support and care they need to live life fully? We come together to see one another, share something of ourselves, strategize and advocate. Sunday, August 16th is the last day to register for the MDF Annual Conference before the registration fee increases from $100 to $150 per person.

This year, MDF is presenting a deep look at current DM research and drug development, in addition to significant new advocacy, interactive self-help and other programming. As always, the conference remains one of the best places anywhere for families to convene. Take a look at the full agenda and register today.

Questions? Contact us at
MDF Family Day
Last chance to buy tickets! Join us in San Francisco on August 29 for the inaugural MDF Family Day celebration.

Upcoming Support Group Meetings
8/15 - Atlanta, GA
8/15 - St. Paul, MN
8/18 - Caregivers (online)
8/22 - Tampa, FL
8/22 - Murfreesboro, TN
9/1 - Ottawa, ON
9/5 - Indianapolis, IN
Clinical Trials Resource Center
Up-to-date information on current clinical trials.

Find a Doctor
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Toll free (US only): 86-MYOTONIC
Phone: (415) 800-7777

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