Dr. Jacinda Sampson describes strategies for ensuring a successful visit to your medical professional.

Dr. Jacinda Sampson describes the importance of, and strategies for, creating a medical team for myotonic dystrophy care.

Presented on September 8th, 2023.

Diana Varela, Public Affairs Specialist
Social Security Administration

Joyce Lee, Medical Relations Officer
Department on Disability Services

Gain a better understanding of the role of the Social Security Administration (SSA) programs, benefits, and services available to the DM community in the US. Leaders from the SSA will join this panel to help demystify the application, denial, and appeal process.

Click here to learn more about the 2023 MDF Annual Conference.

Presented on September 8th, 2023.

Johanna Hamel, MD
University of Rochester Medical Center

This session is ideal for those new to the DM1 community and those seeking a refresher. Learn from a leading expert about the causes and genetics underlying DM1, how and when in life it can affect different symptoms of the body, tips for self-management of symptoms, and how to best work with your clinical care team to ensure the best quality of life.

Click here to learn more about the 2023 MDF Annual Conference.

Originally presented on September 10th. 2021 as a part of the DM2 Track at the 2021 Virtual MDF Annual Conference.

Learn about genetic factors causing DM2, the different body systems affected, the most common symptoms, and how best to manage and provide care for the disease from a leading expert. Appropriate for newly diagnosed and those living with DM2 for many years.

Speakers include:

• Johanna Hamel, MD
• Lindsey Baker, PT
• Araya Pwanant, MD

Originally presented on September 10th, 2021 as a part of the DM1 Track at the 2021 Vitual MDF Annual Conference.

Learn about genetic factors causing DM1, the different body systems affected, the most common symptoms, and how best to manage and provide care for the disease from a leading expert. Appropriate for newly diagnosed and those living with DM1 for many years.

Presented by Jacinda Sampson, MD, PhD.

Learn about the different resources that have been created for the Myotonic Dystrophy community! This presentation provides an introduction to help familiarize you with the resources and support options available for families affected by myotonic dystrophy.

The resources discussed during this video can be found at:

• Clinical Care Documents, Guidelines, and Toolkits
• Study and Trial Resource Center
• Request Warmline Phone Support
• Find a Myotonic Dystrophy doctor near you
• US Financial Resources
• Juvenile-onset Adult (JOA) Programs
• Digital Academy with recordings of previous conference sessions and webinars
• Myotonic Dystrophy Support Groups

For newly diagnosed families, we recommend the following resources:

• Start your myotonic dystrophy journey here
• Sign up for the Myotonic email list
• Learn about the impacts of myotonic dystrophy with the Body Systems Tool
• Confirm you diagnosis with a Genetic Test
• Get answers to Frequently Asked Questions (FAQs)

Have questions? Need more help? Contact us!

Presented during Myotonic's Friday Afternoon Webinar Series.

Identify and learn how to manage your responsibilities as a caregiver. Learn how to recognize, understand, and respond to the emotional challenges of being a caregiver. Explore stress management techniques and learn of the resources available for caregivers and care receivers. Be sure to check out the resouces discussed during the presentation.

• Southern Caregiver Resource Center
• Gardening for Health and Wellness - A Virtual Garden Workshop

About the Presenter:

Valeria Ochoa, Southern Caregiver Resource Center (SCRC)

Valeria Ochoa is a Community Educator for the Southern Caregiver Resource Center (SCRC). She travels San Diego County holding bilingual classes, training sessions, and workshops for community groups and caregivers. Valeria’s education in Public Health, experience working with diverse communities, and extensive background in health disparities make her an excellent advocate for caregivers. She continues to educate and empower communities and connect individuals to vital services offered by the Southern Caregiver Resource Center.

Presented during Myotonic's Friday Afternoon Webinar Series.

This presentation will discuss the outcome of the recent study exploring the prevalence of myotonic dystrophy type 1 in the United States. We will discuss the study, the first of its kind focused on myotonic dystrophy, including how common we now believe the disease to be in the general population, how that number as determined, implications for ongoing testing for DM1 in the general population, and what it may mean for helping advance DM1 treatment and drug development.

About the Presenter: Dr. Nicholas Johnson treats adults and children with both common and rare neuromuscular conditions, yet his work doesn’t end in the clinic. He dedicates significant time each week to laboratory research, and is part of a team at VCU Health working to advance the treatment of genetic muscle disorders, with a special emphasis on muscular dystrophies. Dr. Johnson is board-certified in neurology, neuromuscular medicine and neuromuscular pathology by the American Academy of Neurology, and serves on its government relations committee.

Dr. W. David Arnold, a researcher and practicing doctor at the Ohio State University, presents an overview of myotonic dystrophy during the virtual April 2020 Worthington, Ohio myotonic dystrophy support group meeting.

Download Dr. Arnold's presentation!

Read more about the Arnold Lab at the Ohio State University.