2018 MDF Annual Conference Session Videos and Presentations

The 2018 MDF Annual Conference took place Friday, September 14, 2018, through Saturday, September 15, 2018, 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. More than 400 families, clinicians, researchers, industry representatives and caregivers attended to improve the lives of people living with myotonic dystrophy.

Videos and presentations from the conference are available via the links below in order of their presentation at the Conference. Caregiver and support group meetings were nto taped and do not have presentations. If a link is not available, the presentation and/or video has not been received or is not yet available. Please check back or contact Myotonic for more information.

Resources & Recordings

Gut Instincts: GI Symptom Management

Presentation
Leila Neshatian, MD, MSc, Stanford University

Breathe Easy: Respiratory Symptom Management

Presentation
Valeria Sansone, MD, NEuroMuscular Omnicentre (NEMO)

DM 101: Getting a Handle on the Basics

Presentation
Nicholas Johnson, MD, Viriginia Commonwealth University

Staying Strong: DM & Exercise

Presentation
Katy Eichinger, PT, PhD, Stanford University

Becoming a DM Advocate: Community Update & Training

Presentation, Embedded Video of Senator Durbin
Jenn Dale, Faegre Baker Daniels

Living with DM: Patients Report on Changes Over Time

Video Recording, Presentation
Facilitator: Charles Thornton, MD, University of Rochester

Strategies for Managing Progression

Video Recording, Presentation
Cynthia Gagnon, PhD, OT, Université de Sherbrooke

Video Recording, Presentation
Missy Dixon, PhD, University of Utah

Consensus-based Care Recommendations: What Do They Mean for You?

Video Recording, Presentation
Facilitator: Jacinda Sampson, MD, PhD, Stanford University

Accelerating the Search for Therapies: What's Happening, What's Next

Video Recording, Presentation
Elizabeth Ackermann, PhD, MDF

Industry Updates on Drug Development

Video Recording, Presentation
Ranjan Batra, PhD, Locana

Video Recording, Presentation
Matthew Disney, PhD, Expansion Therapeutics

Video Recording, Presentation
Joseph Horrigan, MD, AMO Pharma Ltd.

Video Recording, Presentation
Laurence Mignon, PhD, Ionis Pharmaceuticals

Conference Q&A

Video Recording
Cynthia Gagnon, PhD, OT, Université de Sherbrooke
Laurie Gutmann, MD, University of Iowa
Charles Thornton, MD, University of Rochester
Laurence Mignon, PhD, Ionis Pharmaceuticals

Questions?

Contact Myotonic via email or phone: 415-800-7777.

Myotonic Dystrophy News

November 20,2024

New Educational Series - Understanding Myotonic Dystrophy

MDF is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers! Our first animation “Understanding Myotonic Dystrophy – The Basics” is a broad introduction to myotonic dystrophy to help increase awareness and understanding.

October 18,2024

Research Archive: "Increased Frequency of Repeat Expansion Mutations Across Different Populations"

MDF's Chief Scientific Officer, Dr. Andy Rohrwasser, summarizes a study “Increased frequency of repeat expansion mutations across different populations” published in Nature Medicine in October 2024, an important genetic study examining the presence of repeat expansions including myotonic dystrophy (DM) in over 82,000 individuals. For our myotonic dystrophy community, the study confirms the high prevalence of DM1. The study also highlights the importance of vigilance for healthcare providers suspecting the disease as the repeat expansion might be present with low repeat numbers without any (yet) apparent symptoms.

October 18,2024

The World Glows Green in Celebration of International DM Awareness Day 2024!

In celebration of the 4th Annual International Myotonic Dystrophy Awareness Day, our incredible community members and partners from all around the world dressed for the occasion and lit their local and national monuments in green.

October 18,2024

MDF Announces 2024 Pilot Grant Recipients Selected & Request for 2025 Pilot Grant Applications

After rigorous review, we are excited to share that in September, the MDF Board approved four outstanding projects to receive the MDF Pilot Grants. These research efforts will focus on critical areas for DM, including sleep, dyslipidemia, exercise, and therapeutic delivery. We are also excited to announce the launch of a new round of our Pilot Grants Program this November! This program offers $50,000 in one-year support for researchers focused on myotonic dystrophy (DM).

September 15,2024

Global Alliance of 60+ Myotonic Dystrophy Organisations Celebrate the Fourth Annual International Myotonic Dystrophy Awareness Day

On the 15th of September 2024, the Global Alliance for Myotonic Dystrophy Awareness unites over 60+ organisations from around the globe to mark the fourth annual International Myotonic Dystrophy Awareness Day. This day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that aﬀects thousands of individuals and families worldwide.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.