Friday Afternoon Webinar Series

Join us every Friday at 12:00PM PDT through June for our new Friday Afternoon Webinar Series! DM expert clinicians, researchers, community members will present a different topic designed for our community at large - no advanced knowledge of the topics is needed to participate. Don't miss Caring for the Caregiver with Valeria Ochoa, Friday May 8th! Click here to register for upcoming webinars and watch recorded sessions on our Digital Academy.

Myotonic Publishes Clinical Care Recommendations for Pulmonologists

Clinical Care Recommendations for Pulmonologists Treating Adults with DM1 published in Respiration. In order to improve and standardize care for adults living with DM1, 12 leading DM1 pulmonologists in Western Europe, the UK, Canada, and the US joined together, with the support and organization of Myotonic, to create Consensus-based Care Recommendations. Share the recommendations with your Pulmonologist>>>

New Resources Available!

The Health Insurance Considerations for People Living with Myotonic Dystrophy in the US & the Employment Access Toolkit are now available to download.  Myotonic created these resources to help guide families through the complexities of the insurance and employment systems. Download these resources and more on our Toolkits & Publications page! >>>


April Advocacy Update

The congressional appropriations committees are working behind the scenes to draft budget bills funding the NIH & PRMRP. This month’s advocacy update provides a brief report on our ongoing efforts to increase federal funding for myotonic dystrophy research and includes practical information for community members in need of health insurance coverage during the COVID-19 pandemic. Read the funding update and find resources for the COVID-19 Pandemic>>>

The Herbert Family's Journey

In 2005, David Herbert learned he had myotonic dystrophy (DM), following a cascade of DM diagnoses through his extended family. It began with a cousin who was tested after experiencing symptoms, then another cousin decided to get tested. "It became a topic within our family," says David. "What does this mean? I’d never heard of this disease." Read about the Herbert Family's journey and David's work to join the Myotonic Board of Directors >>>

Join the Myotonic Dystrophy Family Registry

You can increase the global understanding of DM and improve lives by joining the Myotonic Dystrophy Family Registry (MDFR). Aside from helping researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, the MDFR uniquely allows registered families to access the same anonymous data as the professionals. Interested in future myotonic dystrophy (DM) studies? Join the family registry or update your listing today!>>>


Financial Resource Guides Available!

To assist US-based families with the additional expenses associated with myotonic dystrophy, Myotonic has developed a series of federal and state-specific financial resource guides. Each resource guide includes information on financial support related to autism, caregivers/respite, employment, exercise and outdoors, housing, healthcare and medication, scholarships and education, transportation and equipment, and more. Access the Federal and State-specific financial guides!>>>

Apr. 2020
My Events

Upcoming Events:


5/08 - Webinar: Caring for the Caregiver

5/15 - Webinar: Virtual Chair Yoga

5/22 - Webinar: Beyond ADLs: Strategies for Life Modifications, Socializing and More during COVID-19

5/29 - Webinar: Gene Editing for DM

6/05 - Webinar: Exercise for the DM Community

8/23 - Camp JOA 2020

 

Upcoming Support Group Meetings:


5/03 - Virtual Kansas City, MO Support Group

5/05 - Facebook Chat: Congenital & Juvenile Onset

5/05 - Facebook Chat: Juvenile-onset Adults

5/05 - Facebook Chat: Adult-onset

5/09 - Virtual Atlanta, GA Support Group

5/12 - Telefonische Gesprächsgruppe DM1 / DM2

5/12 - Facebook Chat: Adult-onset

5/19 - Facebook Chat: Adult-onset

5/20 - DM Community Call

5/21 - DM2 Virtual Support Group

5/24 - Virtual Dallas, TX Support Group

5/26 - Facebook Chat: Adult-onset


See the full Myotonic calendar >>>

My Featured Content

Stay connected with Virtual Community Groups! Although the CDC has recommended a shelter in place, that's no reason no to connect with other community members and their loved ones from all over the world. We currently offer groups for:
 
Share your ideas, experiences, stories, and find support in the DM Community! Learn more about our Virtual Support and Facebook Groups! >>>
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