Myotonic Community Forum Update

Many of our community members have joined closed Myotonic Facebook groups to network, share information and make friends in the DM community. Myotonic offers private Facebook groups for people with DM1, DM2, JOA, Caregivers, and many more!

These online forums complement Myotonic’s support group program, which features both onsite and virtual/online meetings. These programs have replaced the community forum Myotonic has hosted for many years, and no one has posted in or used that older site in over a year. The community forum site costs more than $500 a year in licensing fees to publish.

Given that the site hasn’t been accessed in over a year, Myotonic will cancel the site when it comes up for renewal August 1. We have already downloaded photos from the community forum, and will upload and make this content available on our website in the near future. If you have other content on the community forum such as videos that you would like to keep, please log into the community forum and download this content before July 30, 5 PM PT.

Join a Myotonic Facebook Group:

Other Facebook groups associated with Myotonic:


Find other support options here! If you have any problems with the downloading process, contact Program Associate Kleed Cumming at If you aren’t already in one of Myotonic’s private Facebook groups and would like to join, email Program Director Leah Hellerstein at Question? Contact Myotonic: 415-800-7777 or

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