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Thank you for applying for a 2024 MDF Regional Conference Scholarship!
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Professional Session Abstracts - 2023 MDF Annual Conference
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You will now be redirected to the A Damn Good Time: Party to Make Myotonic Dystrophy History!
Myotonic livestreamed the following sessions from the 2019 Annual Conference in Philadelphia on Saturday, September 14th. Check back shortly for the uploaded recordings!
Thank You for Completing the MDF DM Day Survey!
We sincerely appreciate the time and attention you have devoted to filling out this survey. Your feedback will help MDF produce the best possible events for the DM community.
Myotonic dystrophy (DM) can affect all age groups, and people living with DM often have different symptoms at different ranges of severity.
Myotonic Dystrophy Family Registry, Report to the Community. MDF launched the myotonic dystrophy Family Registry (MDFR) in January 2013 as a tool to help researchers and the myotonic dystrophy (DM) community learn more about the scope and impact of this disease, and to locate and organize the DM patient community for studies and trials.
¡Bienvenido al directorio de recursos en español de MDF!
MDF proporciona una variedad de recursos para personas que viven con distrofia miotónica (DM), sus familias, proveedores médicos y otros individuos involucrados en su cuidado o preocupados por su seguridad, salud y felicidad.
If you need an Accessible Room, please make sure to check the box under "Requests" when booking.
Join us at our conferences. Together, families, researchers, and other community members from all over the world connect, learn and bond over our mission of Community, Care, and a Cure.
Willkommen im deutschsprachigen Ressourcenverzeichnis der MDF!
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PepGen, a member of the Global Alliance for International Myotonic Dystrophy Awareness and Gold Sponsor of the 2022 MDF Annual Conference, is forming a 6 to 8 person community advisory board of adults living with DM1 and their caregivers.
Welcome to the Myotonic Dystrophy Research Map
The Myotonic Dystrophy Research Map is an interactive, visual database of the current DM research ecosystem compiled by the Myotonic Dystrophy Foundation (MDF).
Myotonic Dystrophy Foundation community members have been active partners in bringing the research to this point, by supporting and participating in studies, joining registries, responding to surveys, and funding patient advocacy organizations like MDF.
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Rally Support for the International Myotonic Dystrophy Awareness Day US Senate Resolution
Support International Myotonic Dystrophy Awareness Day on Sept. 15! Get the facts about DM and help garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Do your part to help raise myotonic dystrophy awareneess by teaching others about DM.
Find all the archived links metioned in our Instagram posts below:
2021
The Myotonic Dystrophy Foundation (MDF) supports scientific investigations to enhance the quality of life of people living with myotonic dystrophy and advance research focused on finding treatments and a cure for this disease. As a part of this effort, the MDF offers a number of funding opportunities for DM researchers and supports research efforts.
Since 2009, the Myotonic Dystrophy Foundation (MDF) has provided two-year pre- and postdoctoral research fellowships to support new and innovative studies relevant to the pathogenesis of DM, disease progression, best practices in clinical management of the disorder, and therapeutic and diagnostic development for myotonic dystrophy.
Camp JOA has been Postponed to 2021 due to COVID-19. To minimize the spread of the Coronavirus and ensure the safety of the campers, MDF has decided to postpone Camp JOA.
Are you ready to help drive Care and a Cure? Our Myotonic Strong program offers three levels of monthly giving: Partners, Warriors, Champions and Heroes. Members of every level will receive exclusive content by email!
Myotonic created Health Insurance Considerations for People Living with Myotonic Dystrophy in the United States to help you navigate the process of making sure your medical treatments and medications are covered, as well as understand how to appeal your claim if it’s denied.
Grassroots fundraising is one of the most helpful and active ways to support our mission of Community, Care, and a Cure. Here, we hope to provide you with the tools you need to start a fun, unique fundraiser in your community!
In 2016 Myotonic made a grant to to RUCDR Infinite Biologics (now Sampled.com) and Rutgers University, which led to the creation of 21 induced pluripotent stem cells (iPSCs) from seven subjects for DM1 and DM2.
Resources related to the coronavirus (COVID-19). The Myotonic Dystrophy Foundation is concerned COVID-19 may have a disproportionate impact on families affected by myotonic dystrophy.
Learn more about lodging and transportation for the 2022 MDF Annual Conference in San Diego, CA.
Our mission is to improve the quality of life of people living with myotonic dystrophy (DM) and accelerate the search for therapies.
Myotonic is pleased to announce the 2019 Myotonic Annual Conference, taking place Friday, September 13 and Saturday, September 14, 2019, at the Loews Philadelphia Hotel in Philadelphia, PA.
Learn more about lodging and transportation for the 2019 Myotonic Annual Conference in Philadelphia, PA.
Find the support you need with MDF. Get more information and access to our support programs: Warmline, Phone Buddies, and Support Group Map.
MDF is connecting community members around the nation with 1-to-1 support. We encourage anyone who needs support to reach out to access this critical service. We will try to match you with a phone buddy based on your situation and preference.
Find resources from the 2018 MDF Annual Conference, which took place on Friday, September 14, 2018, through Saturday, September 15, 2018, in Nashville, TN.
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Finding a doctor, therapist or other medical professional who understands and has experience with myotonic dystrophy (DM) is one of the most important things you can do to help manage the unique symptoms of DM.
The 2018 MDF Annual Conference took place Friday, September 14, 2018, through Saturday, September 15, 2017, in Nashville, TN. This year’s conference featured networking, symptom management and research update sessions for community members and a full-day closed research and drug development track for academic and industry professionals.
Our Juvenile-onset Adult (JOA) Myotonic Dystrophy program aims to bring these adults living with DM together with support, resources and social opportunities.
When a family or individual is faced with a progressive condition such as DM1 or DM2 they are often presented with additional financial expenses as well as loss of a steady income.
The Myotonic Caregivers Support Group Program consists of a confidential Facebook discussion group, bimonthly Facebook live chat sessions, and a monthly Caregiver Virtual Support Group phone meeting.
These special one-day events bring together Myotonic, clinicians and researchers to support the myotonic dystrophy (DM) patient and family community.
Because of the range of systems affected by myotonic dystrophy (DM), you will likely end up working with a multidisciplinary team to manage your symptoms.
Individuals with myotonic dystrophy may have concerns about starting a family because of the risks of passing the disease to their children. Discussing family planning issues with a genetic counselor can help individuals make an informed decision.
The 2017 MDF Annual Conference is available via live stream on Saturday, September 9th. Follow the link below to watch.
More than 10,000 served. Over $10,000,000 invested. Learn how your support is helping the Myotonic Dystrophy Foundation deliver on its mission of Community, Care and a Cure.
The 2016 MDF Annual Conference was held September 15 - 17, 2016. It featured MDF's largest and most varied array of sessions and meetings for community members and professionals. You can access the presentation slides and videos from many of those sessions via links provided below.
The Northern California Support Group meets quarterly.
Please contact facilitator Leslie Krongold for more information.
Leslie Krongold
Phone: (510) 864-1190
Email: elkrong@yahoo.com
MDF offers resources and information for clinicians treating people living with myotonic dystrophy:
MDF Phase I award for population-based prevalence study announced.
Explore myotonic dystrophy (DM) heterogeneity and the development of meaningful and measureable DM clinical endpoints, dientifying biomakrers nad patient-reported outcmes to guide and advance the discovery of new therapies and design of clinical trials for patients living with myotonic dystrophy.
Expand the accordions below to see related resources for various sessions from the 2015 MDF Annual Conference.
2019
RNA toxicity in non-coding repeat expansion disorders.
Swinnen B, Robberecht W, Van Den Bosch L.
EMBO J. 2019 Nov 13:e101112. doi: 10.15252/embj.2018101112. [Epub ahead of print] Review.
Click on the links below to read past issues of the DM Research News publication. Click here to subscribe!
The Myotonic Dystrophy Foundation (MDF) is committed to helping advance research and therapies. MDF offers the following resources for myotonic dystrophy professionals.
Click here for upcoming conferences and meetings related to myotonic dystrophy and disease.
When you speak up, you influence research funding budgets, the development of therapies, clinical trials, and initiatives to improve the quality of care. Join MDF’s advocacy program and help drive key initiatives for improved care and accelerated research while raising DM visibility to stakeholders in Congress, federal and state agencies, medical professionals and the media.
In 2012, Myotonic announced a joint sponsorship of a collaborative effort led by Dr. Charles Thornton of the University of Rochester Medical Center to launch the Myotonic Dystrophy Clinical Research Network (DMCRN).
Can you imagine a powerful, highly sociable feline, stealthy yet huggable, traveling from town to town, family to family, to spread awareness about DM? A well-mannered lion who's comfortable in a host of different habitats? Now you can! Meet Miles the Myotonic Lion, a cat who's come to life via the imaginations of Loraine Dressler, Lisa Payne, and other grandparents in the myotonic dystrophy community.
Thank you for requesting a physical copy of the MDF Toolkit! Your order will be processed shortly.
Thank you for signing up to receive emails from MDF! We look forward to keeping in touch with you.
Join us at our conferences. Together, families, researchers, and other community members from all over the world connect, learn and bond over our mission of Community, Care, and a Cure.
The 2015 MDF Annual Conference was an enormous success! This year's conference included:
Sarah Berman lives with her husband David and their daughter Zoé in Piedmont, CA.
Government and Nonprofit Organizations
Government or Non-Profit Organizations
- Myotonic, “Family Planning with DM”
- Genesis Genetics, (The pioneer of pre-implantation testing of embryos for inherited genetic abnormalities.)
Resources from the 2014 Myotonic Annual Conference: Food Preparation for Dysphagia session.
Resources from the 2014 Myotonic Annual Conference DM2 - Focus on Pain Management session.
MDF designed this volunteer initiative to educate the next generation of medical professionals about myotonic dystrophy in order to improve clinical care and shorten the diagnostic odyssey. We need you!
Regardless of the form of DM or the severity of symptoms experience by a patient, individuals with myotonic dystrophy can have severe reactions to anesthesia and should be monitored carefully whenever anesthesia is administered.
If you have any questions or need help with any advocacy action items, please contact us by email at info@myotonic.org, or by phone at 415-800-7777.
The 2014 MDF Annual Conference occurred in Washington, DC September 12-13 at the Washington Hilton Hotel. The meeting was an incredible opportunity to hear updates from our academic, research and pharmaceutical partners, and take advantage of new and expanded conference offerings. Read a summary of the 2014 Conference.
Board member Todd Stone's two sons were diagnosed with myotonic dystrophy in 2006.
Watch our MDF Advocacy Training webinar for an introduction to grassroots advocacy.
Teresa has become a champion for myotonic dystrophy in Canada, but until about 10 years ago, she had never heard of the condition.
When Marty Benner’s granddaughter, Sophia, was born in November 2006, the doctors and nurses immediately knew something wasn’t right.
Lisa Payne's journey began when her grandson, Michael, was diagnosed with at 16 months old with congenital myotonic dystrophy. "Although the disease affects his mother and runs in his family, until his mother was diagnosed, nobody was aware of it," she says.
Elizabeth Florence lives in Dallas, Texas, with her husband, and two sons, Sam and Will. Sam was born with congenital myotonic dystrophy. Will does not have the disorder.
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By fundraising for the Myotonic Dystrophy Foundation (MDF), you can empower yourself and your family and make a difference in the fight against myotonic dystrophy, helping increase the funding available to support the DM community and for meaningful research into treatments and a cure.
Learn more about former members of the Myotonic Dystrophy Foundation's Board of Directors.
Everyone experiences myotonic dystrophy (DM) differently. Learn about symptoms and find tools to help you navigate this complicated disease.
Your path to a correct myotonic dystrophy (DM) diagnosis can be long and complex, as medical professionals see these cases so infrequently that they often aren’t familiar with DM.
The program for the 2012 MDF Annual Conference, held August 17th and 18th at the Hyatt Regency San Francisco Airport, is below. Click on the link next to each session to view the presentations or handouts included in that session.
A list of resources recomennded by Myotonic, including: "The Facts: Myotonic Dystrophy", by Professor Peter Harper; The Find a Doctor Program; Financial Resouces for People Living with DM; the Myotonic Toolkit; Anesthesia Guidelines; Myotonic Warmline Support; and more!
Do you want a creative way to donate to the Myotonic?
You can sell items on eBay and a portion of the proceeds will be donated to Myotonic.
Looking for information on myotonic dystrophy and not sure where to begin? Start here! For a printer friendly version of the FAQs, click the printer icon at the bottom of the page.
Learn more about the staff curently working at the Myotonic Dystrophy Foundation.
We want to hear from you, and we have several ways for you to connect with us.
Your voice can help influence research, the development of therapies, clinical trial efforts to improve the quality those living with myotonic dystrophy (DM).
The Myotonic Dystrophy Family Registry is unique in that it not only helps researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, but also allows anyone who is registered to have access to the anonymous data, including individuals and families living with DM.
The Myotonic Dystrophy Foundation (MDF), a non profit public charity, focuses on Community, Care and a Cure for people living with myotonic dystrophy (DM). We couldn't do it without you!
Are you interested in joining forces with the Myotonic Dystrophy Foundation (MDF) to serve more members of the myotonic dystrophy (DM) community and drive research? Team MDF needs you!
Expand the dropdowns below for focused information on skeletal muscle weakness.
Expand the dropdowns below for focused information on skeletal muscle weakness.
Expand the dropdowns below for focused information on skeletal muscle weakness.
Myotonic dystrophy (DM) is a multisystemic disorder that can affect all age groups. Because of the range of systems affected, management requires a more expansive approach than most disorders and care is best provided by a coordinated, multidisciplinary team.
Myotonic dystrophy is a progressive disorder that affects multiple body systems. Currently there is no cure for myotonic dystrophy (DM1, DM2), and therefore managing the disease symptoms is essential to enhancing quality of life for individuals living with DM.
Although myotonic dystrophy (DM) currently has no treatment or cure, one of our priorities at the Myotonic Dystrophy Foundation (MDF) is to increase the knowledge and science available to any researcher or clinician seeking to uncover answers to their DM questions.
Although myotonic dystrophy (DM) is a form of muscular dystrophy, it is misleading to think of this merely as a muscle disease.
The mission of the Myotonic Dystrophy Foundation is Community, Care, and a Cure. We support and connect the myotonic dystrophy community. We provide resources and advocate for care. We accelerate research toward treatments and a cure.
We hope this site will help you navigate the path of myotonic dystrophy; our goal is to provide you with accurate information about DM and share the experiences of other people who are living with this disorder.
Myotonic dystrophy (DM) is a genetic disorder that affects many parts of the body. There are different types of DM, and some cause more serious problems than others.
Click on each letter below to expand the list of definitions.