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.
Virtual Support
For those who do not live near one of our existing support groups, or prefer connecting virtually for any reason, our online support community is available. Click here to see our upcoming virtual meetings.
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.
Facilitated Virtual Support Groups
- DM2 Virtual Support Group #1 - for individuals diagnosed with DM2 on the 3rd Thursday of every month, facilitated by Tom McPeek.
- DM2 Virtual Support Group #2 - for individuals diagnosed with DM2 on the 1st Thursday of every month, facilitated by Hailey Martinelli.
- DM2 Caregivers Virtual Support Group Meeting – for people caring for someone living with DM2 on the 3rd Tuesday of every month, facilitated by Kim McPeek.
- Caregiver Virtual Support Group - for caregivers of individuals living with DM (parents of children, spouses/partners, grandparents – all caregivers are welcome) on the first Saturday of every month, facilitated by Ted Salwin.
- Caregivers of Children with CDM Virtual Support Group - for parents or guardians of children living with myotonic dystrophy on the 3rd Saturday of every other month, facilitated by Loraine Dressler and Sarah Berman.
- Telefonische Gesprächsgruppe DM1 / DM2 - eine telefonische Selbsthilfegruppe für Personen mit DM-Diagnose, die Deutsch sprechen, jeden zweiten Dienstag im Monat, moderiert von Bernhard Rogg.
- Grupo de Soporte Virtual en Español de MDF - un grupo de apoyo virtual para personas y familias que viven con DM que hablan español, facilitado por David Kugler y Araceli Mera.
- Canada - for individuals and families living in Canada, facilitated by Julie & Alexandra LeBoeuf.
- Juvenile-onset Adult (JOA) Warriors – for individuals diagnosed with DM as young adults on the 3rd Tuesday of every month, facilitated by Ann Woodbury and Carolyn Valek.
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.
- MDF Main Page
- Caregivers Group
- DM1 Group
- DM2 Group
- Unaffected Male Caregivers Group
- Juvenile-onset Adults Group
Local Support Groups
COVID-19 Update
To minimize the spread of the Coronavirus, all MDF support groups are currently meeting virtually or may be temporarily on a break.
Some local support groups are for individuals living with DM only, whereas others invite caregivers to attend, too. Please contact the facilitator 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:
- 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. MDF 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 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.