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Myotonic Dystrophy Support Programs

The Myotonic Dystrophy Foundation is the world’s largest myotonic dystrophy (DM) patient advocacy organization, connecting people living with DM in more than 80 countries around the world. What helps make this organization so meaningful is your role in it – your advocacy to advance “Community, Care, and a Cure” and your support of us and of one another.

Individuals diagnosed with myotonic dystrophy (DM) and their families can sometimes feel overwhelmed, isolated, and in need of support. The Myotonic Dystrophy Foundation (MDF) support programs create safe spaces to network, learn, and share. Explore the options below and find the support you need.

MDF support programs are led by trained volunteer community members. Volunteers are not medical professionals and cannot give medical advice; speak to a medical provider if you have questions about your health. Volunteers respect the privacy and confidentiality of anything shared in these programs and can refer you to MDF’s trusted, credible information and resources.

Individuals who have not yet been diagnosed are encouraged to learn more about genetic testing and should have a confirmed diagnosis before participating in any MDF support or Facebook groups. Click here to learn more about testing and diagnosis.

For additional information about any of MDF's support groups or to learn about their upcoming meetings, please contact MDF at info@myotonic.org or by phone at 415-800-7777.

Available Support Groups

  • Virtual Support Groups by Region
  • Virtual Support Groups by Topic
  • In person and Hybrid Support Groups
  • Online Facebook Support Groups and Chats

Virtual Support Groups by Region 

These support groups welcome anyone living with DM1, DM2 and their caregivers to join. Regional Support Groups are facilitated by Support Group Facilitators who live in a specific geographic region and may benefit people looking for support around state specific challenges or meetings in specific time zones. However, due to their virtual nature, you can join any that meet your needs and your schedule.

Virtual Support Groups by Topic

These topic-based support groups are meant to connect DM community members based on their diagnosis, shared language, or role in the DM community.

In Person and Hybrid Support Groups

  • Michigan Regional Support Group - This group meets once a month and is facilitated by Suzanne Perkins and Scott Virgo. This support group is Hybrid, having an in person and virtual option.
  • Portland, Oregon Regional Support Group - This group meets once a month and is facilitated by Mark Coplin. This group meets on a rotating schedule of in person and virtual meetings.
  • Kansas City Regional Support Group - This group meets every other month and is Facilitated by John Cooley and Pat Gibson. This group only meets in person.

Facebook Groups 

MDF administers a number of Facebook groups that are moderated by trained MDF volunteers. The DM1 group holds a Live Chat on the first and third Tuesday of the month.

Please contact info@myotonic.org to learn more about the group, including when and where the next meeting will be held. To receive emails notifying you of upcoming meetings, please complete the form below the map. If you would like to start a new group or volunteer with an existing support group, email info@myotonic.org.

 

 

Here are some tips to get the most out of our interactive map:

  1. Zoom into the interactive map to see all the support groups in a given area. Hold control and scroll your mouse up and down, or click the plus sign to zoom in (see a smaller geographic area) and the minus sign to zoom out (see a larger geographic area).
  2. Filter by field of specialization by clicking on the icon to the left of "Support Groups". This expands the sidebar to show the map legend with checkboxes next to each category (e.g. MDF Support Groups, Other Support Resources, etc...).
  3. Expand the map by clicking the fullscreen icon in the upper right hand corner. This will open a new tab of the map in the expanded view with a search box. You can type your city, state or zip code to readjust the map. If there are no visible markers, try zooming out or searching a broader area (e.g. "California" instead of "San Diego).
  4. Star the map to save it to your Google Account. This allows you to access the Support Groups map through Google Maps on your mobile device. Find it though the main menu under "Your Places" and the "Maps" submenu.

Questions?

Contact MDF at 415-800-7777 or via email at info@myotonic.org.

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