Programs and Events

Eric Hutchinson Raises Funds for Care and a Cure

The myotonic dystrophy (DM) community has a strong champion in singer-songwriter Eric Hutchinson. As part of his long-time efforts to support Care and a Cure for myotonic dystrophy, Eric is offering one-of-a-kind fan activities and memorabilia in a new pledge campaign, and a portion of the proceeds will be donated to Myotonic.

Myotonic Honors Community Leadership Award Winners

Congratulations to our Community Leadership Award winners: Loraine Dressler, Carolyn Valek and Eric & Taylor Jensen! Click here to learn more about the amazing work they do for Care and a Cure.

DM PFDD Meeting - Bringing Your Voice to Therapy Development

Myotonic held the first myotonic dystrophy Patient-Focused Drug Development meeting with key senior leadership from the Food and Drug Administration (FDA) as part of the 2016 Myotonic Annual Conference. We designed the meeting to build on the work Myotonic has been conducting with the FDA to define and optimize the regulatory pathway for potential DM therapies. The meeting, the first Externally-Led PFDD meeting and the largest PFDD meeting held to date with over 200 attendees in the room and online, is helping change the way the FDA understands DM, the DM community and the approach to regulatory review for DM therapies. 

Fun Family Tradition Supports DM Community

The Jensen family hosts an incredible crawfish boil each summer to support Care and a Cure. This year’s boil was bigger than ever with San Diego Harley-Davidson as a partner. To date, this event has raised nearly $100,000! Read more here.

Myotonic Active at the 2016 BIO International Convention

Our Staff recently attended the annual BIO convention, the meeting and partnering place for the biotechnology and pharmaceutical industry. BIO is about opportunities—opportunities for learning and working together to foster new drug development. Myotonic engaged key industry leaders in discussions of therapy development in DM, exchanging information on existing DM drug discovery and development, as well as opportunities for launching new DM programs.

International Expert Team Meets to Finalize First-Ever DM Care Recommendations for Doctors

Myotonic and its international team of clinical care partners just met in Miami to draft consensus-based Care Considerations for doctors, pharmaceutical companies and federal regulators reviewing potential therapies. Read more in this article.

The Genetics of DM1 Repeat Size

Researchers from the University of Costa Rica and the University of Glasgow teamed up to investigate the DNA mutation causing myotonic dystrophy type 1 (DM1). They found that polymorphism in the MSH3 mismatch repair gene is associated with the levels of somatic instability of the expanded CTG repeat in the blood DNA of myotonic dystrophy type 1 patients. 

Myotonic Research Fellow Profile: Dr. Melissa Dixon

Dr. Dixon at the University of Utah has been awarded a 2016-2017 postdoctoral fellowship for her research applying fMRI to evaluate connectivity networks in the brains of children with congenital-onset myotonic dystrophy (CDM). Read more here about the work of Dr. Dixon and her colleagues.

Glass Half Full

MDF’s Outreach Director and Support Group Trainer, Leslie Krongold, has moved on from MDF in order to realize a dream that will also benefit the DM community. Read more here to learn about the podcast program she is launching, Glass Half Full, and find out how MDF is continuing to expand on the resources she helped us build.

Myotonic Dystrophy Anesthesia Guidelines

Anesthesia raises special risks to those living with myotonic dystrophy (DM), as the disease results in heightened sensitivity to sedatives and analgesics.

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