California Regional Support Group | Myotonic Dystrophy Foundation

Join us for a virtual meeting of the California Regional Myotonic Dystrophy Support Group!

Third Sunday of Every Other Month

1:30 PM - 3:00 PM Pacific Time

Click Here to Register for the Zoom!
Once you’ve registered, use the link in your confirmation email to join any of the upcoming meetings. If you do not receive a confirmation email, please reach out to info@myotonic.org.

You are invited to a Zoom meeting for the California Regional Myotonic Dystrophy Community! Join MDF Support Group Facilitators, Barbara Ochoa & Rose Albanese, on the third Sunday of every other month! Adults with DM1, DM2, and their Caregivers are all welcome. Share this event with your friends on Facebook!

During the March 16th meeting, there will be a guest speaker, Dr. Sofia Olmos! She will be joining to discuss the Myotonic Dystrophy Family Registry.

Questions?

To RSVP or ask questions, contact MDF by email at info@myotonic.org or by phone at 415-800-7777. To share your contact information with the facilitators, please fill out this form.

We hope to see you soon!

Date(s)

Sun, 01/19/2025 - 04:00AM

Myotonic Dystrophy News

March 13,2025

MDF Launches 2026 Research Grants & Fellowships

MDF is thrilled to announce the launch of the 2026 Research Grant and Fellowship programs—aimed at accelerating myotonic dystrophy (DM) research, to improve the lives of individuals affected by DM, and pave the way toward finding effective treatments and ultimately a cure for this challenging condition.

February 28,2025

Global Alliance of 60+ Myotonic Dystrophy Organizations Unites for Rare Disease Day 2025

The Global Alliance for Myotonic Dystrophy Awareness proudly joins the global rare disease community in commemorating Rare Disease Day on February 28th, 2025. With over 60 organizations collaborating worldwide, the Alliance continues to advance understanding, care, and research for myotonic dystrophy (DM), one of the most prevalent rare genetic disorders.

February 21,2025

Understanding Myotonic Dystrophy: Inheritance of Myotonic Dystrophy Type 1 (DM1)

MDF is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers! Our second animation “Understanding Myotonic Dystrophy – Inheritance of Myotonic Dystrophy Type 1 (DM1)”, explains how DM1 is passed down from generation to generation and highlights the importance of genetic testing.

February 21,2025

Research Feature: "Myotonic Dystrophy (DM) Burden of Disease: A Retrospective Study of Healthcare Costs and Utilization by Individuals With DM"

Hot off the presses - a large study examining healthcare costs and utilization for patients with myotonic dystrophy highlighted high clinical and economic burden, as well as stresses the importance of improving care and lowering the healthcare costs. Specifically the study showed that DM patients:

February 21,2025

Research Fellowship Feature: Haneui Bae, PhD

Drawn to RNA biology, Dr. Bae joined Dr. Auinash Kalsotra’s lab at the University of Illinois for postdoctoral training. Currently, Dr. Bae is working on the project “Investigating the molecular mechanisms of liver dysfunctions in myotonic dystrophy” and optimizing protein quantification assays and exploring DM1 pathologies in the liver, a largely overlooked organ in DM1 research.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.