Originally presented on April 16th, 2021.

Do you have questions for DM doctors and therapists? Join Leila Neshatian, MD, MSc of Stanford University for a “Ask-the-Expert” session on the GI tract. After the success of the Stump-the-Doctor session at the 2020 Virtual MDF Conference, MDF has created a series using the same format to connect families and DM experts.

Dr. Neshatian is a neurogastroenterologist and Gastrointestinal Director at Stanford University, Division of Gastroenterology and Hepatology. Her clinical areas of expertise and research include functional gastrointestinal and motility disorders. Click here to learn more about Dr. Neshatian.

Click here to find all our upcoming “Ask-the-Expert” question sessions!

Originally presented on March 19th, 2021.

Do you have questions for DM doctors and therapists? Join Valeria Sansone, MD, PhD of the NEuroMuscular Omnicentre (NEMO) for a “Ask-the-Expert” session on DM and the Lungs. After the success of the Stump-the-Doctor session at the 2020 Virtual MDF Conference, MDF has created a series using the same format to connect families and DM experts.

About the Presenter

Valeria Sansone has extensive clinical and bench science experience in neuromuscular disorders both from a clinical and basic science perspectives. For the past 22 years she has been in charge of in-patients with muscle disorders at the University Department of Neurology in Milan and the national out-patient neuromuscular clinic at the NEMO clinic. Her main field of research has included the myotonic dystrophies. Click here to learn more about Dr. Sansone.

Click here to learn more about the NEMO clinic.

Resources

Find more information about the Lungs and DM with the Clinical Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1. This guide, co-authored by Dr. Sansone, covers topics such as nocturnal hypoventilation, obstructive sleep apnea, decreased respiratory function and more.

Click here to find all our upcoming “Ask-the-Expert” question sessions!

Originally presented on February 19th, 2021.

Do you have questions for DM doctors and therapists? Join Tina Duong, PT, PhD of Stanford University and Katy Eichinger, PT, PhD, DPT, NCS of the University of Rochester for a “Ask-the-Expert” session on exercise. After the success of the Stump-the-Doctor session at the 2020 Virtual MDF Conference, MDF has created a series using the same format to connect families and DM experts.

About the Presenters:

Dr. Duong is a research physical therapist at Stanford with over 10 years of clinical experience in neuromuscular and pediatric research. She is instrumental in optimizing clinical endpoints for study design and assessments through the CINRG network and research in exercise regiments in mouse models of muscular dystrophy. She continues to work on outcomes development with neuromuscular diseases and pursues her work on the benefits of rehabilitation and exercise as conjunctive therapies. Click here to learn more about Dr. Duong.

Dr. Eichinger is a physical therapist and assistant professor at the University of Rochester, where she is involved in the clinical care of individuals with adult and pediatric neuromuscular conditions. She is involved in natural history studies and clinical trials involving patients with myotonic dystrophy and other neuromuscular diseases. Click here to learn more about Dr. Eichinger.

Resources:

Learn more about exercise recommendations with the Exercise Guide for Individuals with Myotonic Dystrophy. This guide, co-authored by Dr. Duong and Dr. Eichinger, includes information on the benefits of exercise for DM, recommendations on aerobic activity, types of exercise, monitoring exercise, exercise strategies and finding motivation.

Find information on physical therapy and DM with the Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy. Most individuals living with DM will probably first encounter a physical therapist in the multidisciplinary clinic where they receive care. These guidelines, also co-authored by Dr. Duong and Dr. Eichinger, address the role that the physical therapist plays in DM care, including evaluation, education, instructions and physical movement recommendations.

Click here to find all our upcoming “Ask-the-Expert” question sessions!

This class will begin with a warm-up including a body scan, breath work, active-stretching, and joint/spinal mobility work. The intensity will build as we layer on full-body strength training with functional, task-oriented movements, and some balance and coordination exercises. We will wrap up with some grounding movements to calm your nervous system.

Class Preparation

Please consult your doctor before starting any strength training or exercise program. This class can be performed seated or standing. Equipment is not required but the following equipment is optional - dumbbells (or soup cans), a resistance band (or household towel), a soccer-sized ball (soccerball, volleyball, inflatable ball, etc).

About the Instructor

Rachel Kahn is a Nationally Certified Pilates Teacher, Certified Strength and Conditioning Specialist, and is currently pursuing her license for massage therapy. She has been working with people who have disabilities for the past 10 years. Learn more at www.rachelrkahn.com.

Click here to watch the first session.

Click here to watch the second session.

Click here to watch the third session.

This class will begin with a warm-up including a body scan, breath work, active-stretching, and joint/spinal mobility work. The intensity will build as we layer on full-body strength training with functional, task-oriented movements, and some balance and coordination exercises. We will wrap up with some grounding movements to calm your nervous system.

Class Preparation

Please consult your doctor before starting any strength training or exercise program. This class can be performed seated or standing. Equipment is not required but the following equipment is optional - dumbbells (or soup cans), a resistance band (or household towel), a soccer-sized ball (soccerball, volleyball, inflatable ball, etc).

About the Instructor

Rachel Kahn is a Nationally Certified Pilates Teacher, Certified Strength and Conditioning Specialist, and is currently pursuing her license for massage therapy. She has been working with people who have disabilities for the past 10 years. Learn more at www.rachelrkahn.com.

Click here to watch the first session.

Click here to watch the second session.

Click here to watch the fourth session.

This class will begin with a warm-up including a body scan, breath work, active-stretching, and joint/spinal mobility work. The intensity will build as we layer on full-body strength training with functional, task-oriented movements, and some balance and coordination exercises. We will wrap up with some grounding movements to calm your nervous system.

Class Preparation

Please consult your doctor before starting any strength training or exercise program. This class can be performed seated or standing. Equipment is not required but the following equipment is optional - dumbbells (or soup cans), a resistance band (or household towel), a soccer-sized ball (soccerball, volleyball, inflatable ball, etc).

About the Instructor

Rachel Kahn is a Nationally Certified Pilates Teacher, Certified Strength and Conditioning Specialist, and is currently pursuing her license for massage therapy. She has been working with people who have disabilities for the past 10 years. Learn more at www.rachelrkahn.com.

Click here to watch the first session.

Click here to watch the third session.

Click here to watch the fourth session.

This class will begin with a warm-up including a body scan, breath work, active-stretching, and joint/spinal mobility work. The intensity will build as we layer on full-body strength training with functional, task-oriented movements, and some balance and coordination exercises. We will wrap up with some grounding movements to calm your nervous system.

Class Preparation

Please consult your doctor before starting any strength training or exercise program. This class can be performed seated or standing. Equipment is not required but the following equipment is optional - dumbbells (or soup cans), a resistance band (or household towel), a soccer-sized ball (soccerball, volleyball, inflatable ball, etc).

About the Instructor

Rachel Kahn is a Nationally Certified Pilates Teacher, Certified Strength and Conditioning Specialist, and is currently pursuing her license for massage therapy. She has been working with people who have disabilities for the past 10 years. Learn more at www.rachelrkahn.com.

Click here to watch the second session.

Click here to watch the third session.

Click here to watch the fourth session.

Presented during Myotonic's Friday Afternoon Webinar Series.

This webinar will cover a basic understanding of adult nutrition, dysphagia (swallowing difficulties), and food preparation. Dr. Krongold (adult-onset DM1) and her partner, Jessica, will demonstrate the tools needed to prepare three simple, nutritious meals for people with chewing and/or swallowing difficulties.

Click here for more information on the Cooking Video Contest!

About the Presenter: Leslie Krongold, EdD Dr. Leslie Krongold was diagnosed with adult-onset DM1 in 1998. She joined an MDA support group and within a few months she was asked to facilitate the group. In 2013, Dr. Krongold joined the Myotonic staff (formerly MDF) as Outreach Director and launched our international support group program. Dr. Krongold continues to be a support group facilitator in Northern California and has a podcast called Glass Half Full.

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.