Myotonic is the world’s largest myotonic dystrophy (DM) patient advocacy organization, connecting people living with DM in more than 75 countries around the world. What helps make this organization so meaningful is your role in it – your advocacy to advance “Care and a Cure” and your support of us and of one another.
To minimize the spread of the Coronavirus, Myotonic is canceling all in-person support groups. Some groups may be moved to a virtual meeting via phone or computer. Please contact Myotonic Program Director, Leah Hellerstein, LCSW, MPH at Leah.Hellerstein@myotonic.org for more information on our virtual support groups.
Virtual Support Options
Interested in networking, sharing information and making friends in the DM community? For those who do not live near one of our existing support groups, our online support community is always available. The Myotonic Caregivers Support Group is a confidential, virtual support group that meets monthly via webinars. Click here to see our upcoming virtual meetings.
Facilitated Virtual Support Groups
- DM2 Virtual Support Group Meeting
- Telefonische Gesprächsgruppe DM1 / DM2
- Virtual Support Group: DM Community
- Caregiver Virtual Support Group
We also offer Facebook Live Chats on the first and third Tuesday of every month. Our Facebook page and closed Facebook Groups offer active forums for discussion and support as well:
- Myotonic Main Page
- Caregivers Group
- DM1 Group
- DM2 Group
- Unaffected Male Caregivers Group
- Juvenile-onset Adults Group
Other Myotonic Facebook Groups:
- Chicagoland DM Support Group
- Indiana Myotonic Muscular Dystrophy Support Group
- Myotonic support group Greensboro, NC
- Myotonic Support Group - Kansas City, MO
- NEW! Michigan Myotonic Dystrophy Support
- Our Voices - Our Life
- Myotonic Dystrophy Support and Information
- Distrofia Muscular Miotonica ou Distrofia de Steinert
- Telefon-Kontaktgruppe myotone Dystrophie
Click here to RSVP for a support group meeting or share your contact information with a group's facilitator!
Contact Myotonic Program Director Leah Hellerstein, LCSW, MPH at 415-872-7924 or via email.
Local Support Groups
We’re thrilled that so many of you have found each other through Myotonic and are building support groups. You can search for a local resource on the map below. If you would like to start a support group in your area or would like an existing group or resource added to this list, please contact us.
Here are some tips to get the most out of our interactive map:
- 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).
- 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. Myotonic Support Groups, Other Support Resources, etc...).
- 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).
- Star he 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.