Care Tools Video

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.

MDF Advocate Training

Presented on February 8th, 2021 by Kevin Brennan, Bluebird Strategies.

Dyne’s Approach to Targeting DM1. Each month biotechnology, pharmaceutical and academic partners, large and small, working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions.

One of our most popular conference sessions, Strength Training, is becoming a 4-part series! Join Certified Strength and Conditioning Specialist, Rachel Kahn for a series of strength training classes designed for the myotonic dystrophy community.

One of our most popular conference sessions, Strength Training, is becoming a 4-part series! Join Certified Strength and Conditioning Specialist, Rachel Kahn for part 4 of a series of strength training classes designed for the myotonic dystrophy community.

One of our most popular conference sessions, Strength Training, is becoming a 4-part series! Join Certified Strength and Conditioning Specialist, Rachel Kahn for a series of strength training classes designed for the myotonic dystrophy community.

One of our most popular conference sessions, Strength Training, is becoming a 4-part series! Join Certified Strength and Conditioning Specialist, Rachel Kahn for a series of strength training classes designed for the myotonic dystrophy community.

Welcome to our first Virtual MDF Conference! Learn more about the Foundation's recent impact and current projects.

An overview of the basics of DM for the newly diagnosed and those who might appreciate a refresher on DM. This session reviews the genetics of the different types of DM as well as anticipation, the many body systems affected by this disease, what is common/not, anesthesia precautions, cognitive and neuropsychiatric effects, expectations, preparedness, and more.

In this presentation you will learn about many of the key scientific discoveries that have allowed researchers, clinicians and the biotechnology and pharmaceutical industries to develop therapeutic strategies for myotonic dystrophy. You will learn about the identification of the mutations in the genes that cause DM1 and DM2 and how understanding the mechanism through which these mutations cause DM. You will learn how the mutations can change over time in a person and why individuals with DM have such a wide range of symptoms. This foundation of DM knowledge has provided researchers with diverse ways to approach DM therapies and treatments.

This session explores the basics of nutrition and optimal nutrition for myotonic dystrophy. The discussion covers one of the most requested topics, dietary supplements, as well as energy optimization, weight gain/loss, and more.

Join community member Ellen Shapiro for a gentle chair yoga session. This session covers breath awareness, stretching, and mindful movements. Yoga helps to calm us and build flexibility and strength. If you are experiencing anxiety during these unusual times, this might be a nice relaxing session for you! No yoga experience or equipment necessary!

This session explores the many symptoms of DM as well symptom management strategies/techniques. We discuss alleviation of symptoms including fatigue and daytime sleepiness, treatments for systemic issues, quality of life, prevention, medications, and more.

There are more efforts now than ever in the biotechnology and pharmaceutical industries to bring medicines to our community. This presentation outlines various approaches that are under development to treat myotonic dystrophy. You will learn about strategies being taken and progress that has been made in the recent past. You will also learn about potential hurdles that stand in the way of delivering effective therapeutics to DM patients, and how scientists and drug developers are working to overcome these hurdles.

 

This session provides an overview of gastrointestinal health as it relates to myotonic dystrophy, including diagnostic testing, treatment options, and therapies. Dr. Neshatian is introduced by DM Facebook Moderator Bill Nuttall.

Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field: Avidity Biosciences, Ionis Pharmaceuticals, Dyne Therapeutics, and NeuBase Therapeutics.

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

The MDF 2020 Virtual Conference kicked off day two with inspirational stories from the community. This presentation included voices from the community sharing what MDF means the them, the Kayla Vittek Memorial Award presented by Lisa Harvey-Duren, and a special presentation from DM2 community member Rob Besecker, MBA!

You asked, she answered! Get answers to some of the most commonly asked questions about myotonic dystrophy, including questions submitted through the conference registration process.

 

Learn about the current developments in DM2 research. Moderated by Dr. Johanna Hamel of University of Rochester. Panelists will include Dr. Paloma Gonzalez-Perez of the Massachusetts General Hospital, and MDF Research Fellows Dr. Raphael Benhamou of Scripps Research Institute and Dr. Jana Jenquin of University of Florida.

Advocating for myotonic dystrophy research, resources, and inclusion. Through this panel discussion you will: 1. Learn about the past, present and future of MDF’s research advocacy plans and how you can help increase federal funding for DM research. 2. Get an insider perspective from a congressional staff person on what works and doesn’t work when you lobby Congress for increased research funding and other health care priorities. 3. Understand from a DM consumer reviewer how federal agencies like the Department of Defense PRMRP allocate research funds to award grants to fund DM research.

 

This session explores the challenges caregivers face, particularly during COVID-19 pandemic, as well as best practices and realistic ways to help manage stress to support your own well-being.

With many potential drugs and treatments in development, this session explores the different stages of the clinical trials process, how COVID-19 has impacted the research process as well as the FDA review/approval process, how the different therapeutic approaches might be administered, as well as how people living with myotonic dystrophy can prepare now to be ready to participate in trials in the future.

This session discusses the differences in anxiety and depression among those living with rare diseases, looks closely at the recent study exploring the impact of COVID-19 on the quality of life of the DM community, and identifies successful coping and resilience strategies found among people with rare disease, especially during times of isolation and social distance.

Representatives from biotech and pharma companies provide updates on their drug development efforts in the DM field, including companies new to the MDF Annual Conference. his session includes presentations by Syros Pharmaceuticals, AMO Pharma, and Harmony Biosciences.

 

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.

Join Ellen Shapiro for a gentle chair yoga session including breath awareness, stretching, and mindful movements. Yoga helps to calm us and build flexibility and strength. No yoga experience or equipment necessary!

Feeling stressed or just need a break? This 20 minute mindfulness session will help you take a pause, focus on your breathing and become more mindful.

Dr. W. David Arnold, a researcher and practicing doctor at the Ohio State University, presents an overview of myotonic dystrophy.

Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field, including companies new to the Myotonic Annual Conference. The industry updates are followed by the Q&A session where questions submitted throughout the conference are ans

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.

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.

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.

Family members, caregivers and researchers describe their experiences living with myotonic dystrophy and research advances creating hope for the future.

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

A webinary presentation on "Facilitating Social Interaction In Myotonic Dystrophy" by Melissa M. Dixon, PhD, MS from the University of Utah.

Award-winning recording artist & Myotonic community member Eric Hutchinson released the song "Hands" on his new album "Modern Happiness" in partnership with Myotonic! Eric developed the song & video to share his family story & help raise awareness about DM & critically-needed funds for the Myotonic. Directed by Doug Thomsen and Adam Behrmann.

Laurence Mignon, PhD, IONIS Pharmaceuticals provides an update on their drug development efforts in the DM field, 

Myotonic is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.

This interactive panel session was presented in a similar format to the Patient-Focused Drug Development meeting presented by MDF as a part of the 2016 MDF Annual Conference, and the CNS Endpoint Development discussion presented at the 2017 MDF Annual Conference.

Joseph P. Horrigan, MD, from AMO Pharma Ltd. provides an update on their drug development efforts in the DM field. 

Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Matthew Disney, PhD, Expansion Therapeutics

Ranjan Batra, PhD, Locana, provides an update on their drug development efforts in the DM field. 

Current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources with Cynthia Gagnon, OT, PhD, Université de Sherbrooke

Dr. Elizabeth Ackermann reports on the results of the 3-year MDF and Wyck Foundation-funded drug development acceleration effort, MDF 3.0, and introduces MDF’s new initiative, MDF 4.0, including the $1M gene editing project, the Myotonic Dystrophy Clinical Research Network study and other aggressive therapy development programs.

Current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources with Missy Dixon, PhD, University of Utah.

Myotonic community members speak about the impact that living with DM has on their lives.

MDF created a short video to recognize and celebrate Moxley’s incredible commitment and impact on the treatment of myotonic dystrophy and scientific discovery to drive disease understanding and therapy development. “Mox” is in many ways irreplaceable, functioning as a singular force in the myotonic dystrophy field for over four decades.

In 2017, MDF finally achieved one of its goals for the community when congenital myotonic dystrophy was added to the Compassionate Allowance Program for Social Security Disability. Join us for an informational webinar with SSA representative Deborah Dennis, who will explain how this new development affects the DM community and what will change in the application process going forward.

Video #2 from the session: Bringing the Patient Voice to CNS Targeting Drug Development in DM. Dr. Gersham Dent, a neuroscientist working on the DM1 drug development program at Biogen, provides observations on panelists' CNS symptom experiences with regard to possible endpoint identification for future clinical trials of CNS-targeting therapies. From the 2017 MDF Annual Conference.

MDF community members reported on the impact of myotonic dystrophy on the brain from their individual perspectives as people living with DM1, DM2 and as caregivers. Additional insights and comments were provided by members of the conference audience. The session input will be published and used to help drug developers understand the impact of DM on the brain from the patient perspective, and begin to identify clinical trial endpoints. From the 2017 MDF Annual Conference.

Darcy Trill, RDHAP, mobile dental hygenist who specializes in the treatment of people with disabilities and special needs in their homes, provides a compelling overview of the risks of ignoring dental health for DM patients, and strategies for achieving and maintaining oral health.

Dr. Melissa Dixon of the University of Utah discusses mental health challenges and symptoms sometimes experienced by people living with DM, and strategies for coping with everything from depression to anxiety and 'brain fog' From the 2017 MDF Annual Conference.

Dr. John Day of Stanford University presents an overview of brain-related DM impacts that can affect sleep, and current thinking regarding strategies to manage this very prevalent DM symptom. From the 2017 MDF Annual Conference.

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.

A special tribute to Jeremy and Erica Kelly of Myotonic.

On Monday, November 7, 2016, Myotonic hosted the webinar "Living Long, Living Well: A Current Approach to Palliative Care," with Dr. Anne Broderick and Dr. Laurie Gutmann.

Watch "DM Heroes", a moving short film about a few heroes in the myotonic dystrophy community.

Watch Patient-Focused Drug Development Meeting, Part 2, a video from the 2016 Myotonic Annual Conference.

Watch Patient-Focused Drug Development Meeting, Part 1, a video from the 2016 Myotonic Annual Conference.

Watch DM and the Brain, a video from the 2016 MDF Annual Conference.

Watch Occupational Therapy, a video from the 2016 Myotonic Annual Conference.

Watch Family Planning, a video from the 2016 MDF Annual Conference.

Watch Transitioning to Adulthood, a video from the 2016 Myotonic Annual Conference.

Watch Pulmonary Considerations, a video from the 2016 MDF Annual Conference.

Watch Applying for Disability Benefits, a video from the 2016 MDF Annual Conference.

A webinar on meditation hosted by Dr. Genie Palmer, a former associate professor and researcher at Sofia University.

Community members discuss daily living strategies for motivating their adult children living with juvenile-onset DM1.

Community members Penni Warford, Sarah Clarke and Ann Spaulding discuss best practices for planning and implementing your child's Individualized Education Plan.

Dr. Craig Campbell, MD, of Western University in Ontario, Canada, has a discussion with audience members about congenital DM.

A panel of physical therapy professionals and people living with DM discuss ways to stay physically fit.

In this webinar, Kari Lane, RD, CNSC, Clinical Dietitian at the University of Utah, discusses nutritious diets to maintain heart and GI health for people living with myotonic dystrophy.

Myotonic presents a training video for clinical trials participants, presented by Dr. Bruce Wentworth of Genzyme, and Jeanne Dekdebrun and Elizabeth Luebbe of the University of Rochester.

Deborah Miller and Salina Prasad of the US Food & Drug Administration provide an overview of the agency and discuss patient advocacy as it relates to the FDA.

Community-led session presented by Regina Thompson and Jessica Nussbaum. Two caregivers discuss different ways of preparing food for those with dysphagia.

Community-led session led by Sarah Berman, Erica Kelly, and Catherine Wycoff, DPT, GCFP, ABMCP. Parents of children living with DM and a hippotherapy specialist discuss the benefit that this type of therapy can often have.

Community-led session led by Elizabeth Florence and Loraine Dressler. This presentation discusses best practices for traveling with those living with DM.

Cynthia Gagnon, PhD, OT, of the Université de Sherbrooke, discusses ways to modify daily living activities to best benefit those living with DM.

Todd Goodglick, MD, of Washington Eye Physicians, discusses common ophthalmological issues resulting from myotonic dystrophy and what can be done to address these symptoms.

Linda Nguyen, MD, of Stanford University, discusses GI health as it relates to myotonic dystrophy, and ways to combat these symptoms.

Dr. Chad Ruoff of the Stanford Center for Sleep Science and Medicine discusses common sleep issues associated with myotonic dystrophy, and ways to manage these symptoms.

Dr. Darren Monckton explains the current research concerning the significance of CTG repeats for persons with DM1.

Dr. William Groh, MD, of the Crannert Institute of Cardiology at Indiana University, explains how DM may impact your heart, and gives an overview of the cardiac electrical system, common symptoms associated with conduction problems, and preventative measures.

Dr. Matt Disney and Dr. John Day provide an overview of the DM2 disease mechanism and describe how compounds can be designed as potential therapies for this disease.

This webinar is presented by a group of mothers offering their knowledge and experience raising children with congenital DM. This webinar includes informed, practical suggestions from alleviating gastro-intestinal challenges with proper diet and natural supplements to advocating for your child's Individualized Education Program (IEP).

Pat Furlong, CEO of Parent Project Muscular Dystrophy, will share the experiences of Duchenne community members who have participated in clinical trials.

Dr. Doug Kerr, M.D., Ph.D., of Biogen-Idec, describes the U.S. process for taking a drug from testing to approval.

This webinar addresses issues related to caregiver advocacy – partnering with the healthcare team and other family members – as well as self-care and managing the role of a caregiver. 

This webinar discusses various pharmocological and non-pharmacological treatments for muscle, chest, and abdominal pain often experienced by persons with DM1 or DM2.

Many people who are affected by myotonic dystrophy (DM) find it difficult to disclose their condition to those closest to them.

A discussion of the signs and symptoms of dysphagia, a swallowing disorder, as well as the different muscles that can be affected by this DM symptom.

As the inaugural presentation in our Living with DM Webinar series, we discuss the decline of executive function in the CNS due to myotonic dystrophy, as well as strategies for managing this symptom, and an update on current CNS research.

People living with myotonic dystrophy have a frank discussion about the biggest challenges facing their lives.

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

Dr. Darren Monckton describes anticipation, the process by which the disease increases in severity as it is passed from generation to generation, a unique feature of myotonic dystrophy.

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

Dr. Darren Monckton describes anticipation in myotonic dystrophy, the process by which the disease increases in severity as it is passed from generation to generation.

A father and son living with myotonic dystrophy type 2 describe the unique pain they experience with this disease.

An MDF community member and mother describes the medical team she has assembled for her daughter, Kate.

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