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.

Heart Health: Understanding DM Cardiac Symptoms with Saman Nazarian, MD, PhD

This session explains how myotonic dystrophy may impact your heart and provides an overview of the cardiac electrical system, common symptoms associated with conduction problems, and preventative measures.

Download the Heart Health Slide Deck.

Exercise, Nutrition & Speech with Katy Eichinger, PhD, DPT, Leslie Vnenchak, MA, CCC-SLP, and Robin Meyers, RD, MPH, LDN

This rehabilitation panel reviews current research and strategies for managing DM symptoms through exercise, speech and nutrition.

Download the Exercise Slide Deck.

Download the Speech Slide Deck.

Download the Nutrition Slide Deck.

Financial Planning & DM with Pat Bergmaier, CFP®, ChSNC

This session reviews financial planning including government benefits, special needs trusts and wills, social security, and more.

Have more financial planning questions? Connect with Pat on LinkedIn.

Click here to download the slide deck.

Join Certified Genetic Counselor Tiffany Grider from the University of Iowa for an recorded webinar on genetic testing. Topics include:

+ The underlying genetic cause of myotonic dystrophy type 1.
+ How this genetic cause leads to so many different medical problems including muscle weakness.
+ Inheritance, the risks for congenital myotonic dystrophy and the genetic basis for the more severe symptoms.
+ Different types of genetic testing including diagnostic, presymptomatic, and prenatal.
+ Research being done for gene therapies.

View Tiffany Grider's clinical profile.

Download the slides (.pptx).

Dr. Jacinda Sampson, joined by Dr. Ian Bowler, presents on the complications experienced by people living with myotonic dystrophy when they are subjected to anesthesia and, as importantly, other pain medications that can create similar complications and risks. This is critically important information for every DM family member and attending clinician to know. From the 2017 MDF Annual Conference.

Dr. Karen Blakemore, M.D., director of prenatal genetics at the Prenatal Diagnostic Center in the Johns Hopkins Department of Gynecology and Obstetrics, Julie Cohen, certified genetic counselor in the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute, and Alice Schindler, MS, genetic counselor at the National Institutes of Neurological Disorders and Stroke (NINDS), provide a comprehensive overview of family planning strategies and considerations for families living with myotonic dystrophy – at the 2016 MDF Annual Conference.