Thank You for Joining Us at the 2021 Virtual MDF Annual Conference!

September 10th & 11th, 2021

 

Almost 700 of our incredible community members tuned in from all over the globe to make the 2021 Virtual MDF Annual Conference a huge success! We would like to thank all of our Speakers, Exhibitors, Sponsors, and Support Group Facilitators, who were critical partners in putting on this spectacular event.

About the Conference

The MDF Annual Conference unites the entire myotonic dystrophy (DM) community – those living with the disease, their family and friends, industry partners, clinicians and researchers, and everyone else focused on understanding and eliminating the burden associated with myotonic dystrophy.

Building on the record success at our first ever virtual Conference in 2020, this year MDF offered a unique opportunity to learn, connect, support, and empower the DM community.

DM Research Poster Showcase

Traditional poster sessions combine a visual representation of the findings of a paper/study – the poster - with the opportunity for individualized, informal discussion of the presenter’s work. MDF was thrilled to make this opportunity available at this year’s conference in a virtual format, in which special Web rooms were designed for attendees to view posters as well as to provide unopposed time for researchers to discuss their findings in a Zoom-like format with conference attendees, including other researchers, clinicians, individuals with DM, and their families. Click here to view all the Research Posters and Abstracts.

Watch the Recorded Sessions!

All recordings from the 2021 Virtual MDF Annual Conference are now publicly available to watch on demand! Re-watch and share your favorite presentations and learn more about myotonic dystrophy with our extensive catalog of video resources. Watch previous conference sessions, webinars, and technical explanations on DM. Find hope and inspiration from community members sharing their stories and learn about the impact of the Foundation. Click here to start exploring the MDF Digital Academy.

Click on hyperlinked titles below to access each sessions recording. Click here to watch all of the sessions from the 2021 MDF Annual Conference on YouTube.

Please note, any session title followed by an * was not recorded in order to protect the privacy of the live attendees.

General Sessions

The Conference incorporated many traditional events and session such as updates on drug development, highlights of recent successes and future goals of the foundation, and inspiring stories from the community.

Click here to watch all the General Sessions from the 2021 MDF Annual Conference.

• Welcome & State of the Foundation
  Tanya Stevenson, EdD, MPH
  Jeremy Kelly
  Mike Knaapen
  John Fitzpatrick
  Loraine Dessler
  Tom McPeek
  Eric Wang, PhD
  Belen Esparis, MD
   
• Day 2 Welcome: Stories of Inspiration from the DM Community
  Tanya Stevenson, EdD, MPH
  Lisa Harvey-Duren, MBA
  Alexandra LeBoeuf
  Michel LeBoeuf
  Julie LeBoeuf
  Angie Wiggans
  Paul Wiggans
  Glen Wiggans
  Teresa Buffone
   
• Industry Updates Part 1
  Ibraheem Mahmood, AMO Pharma
  Elizabeth Ackermann, PhD, Avidity Biosciences
  Jeffrey M. Dayno, MD, Harmony Biosciences
  William Jacobson, PhD, Harmony Biosciences
  Ashish Dugar, PhD, Dyne Therapeutics
   
• Industry Updates Part 2
  Jane Larkindale, PhD, PepGen
  Beatriz Llamusi, PhD, ARTHEx biotech
  Dietrich A. Stephan, PhD, NeuBase Therapeutics
  Valerie Cullen, PhD, Expansion Therapeutics
   
• Special Performance by Singer-songwriter Eric Hutchinson

Exercise & Movement

This track was designed by professional trainers to include modifications for community members of all abilities.

Click here to watch all the Exercise & Movement Sessions from the 2021 MDF Annual Conference.

• Adaptive Yoga
  Basma Gale
   
• Adaptive Strength Training
  Rach Kahn, NCPT, CSCS, CMT
   
• Seated Adaptive Yoga
  Lin Leong
   
• Sit Fit
  Nathan Perkins, EdD, ACSM-CIFT
   

Track 1: DM Type 1

This track was designed for individuals and families seeking to learn more about DM Type 1.

Click here to watch all the DM1 Track Sessions from the 2021 MDF Annual Conference.

• DM1: Disease Development, Symptoms, and Management
  Jacinda Sampson, MD, PhD
   
• State of DM1 Research & Ways to Engage
  Jeffrey Statland, MD
   
• Clinical Trial Readiness Workshop
  Jodie Howell, LPN
  Nicholas Johnson, MD, MSCI, FAAN
  Alissa Peters
  Christy Newman
   
• Stump the Expert: DM1*
  John Day, MD, PhD
   
• Living Your Best Life: A Community Panel for Individuals Living with DM1*
  Laura Gershenson
  Mindy Kim
  Bill Nuttall

Track 2: DM Type 2

This track was designed for individuals and families seeking to learn more about DM Type 2.

Click here to view all the DM2 Track Sessions from the 2021 MDF Annual Conference.

• DM2: Disease Development, Symptoms, and Management
  Johanna Hamel, MD
  Lindsey Baker, PT
  Araya Pwanant, MD
   
• State of DM2 Research & Ways to Engage
  Laura Ranum, PhD
   
• Clinical Trial Readiness Workshop
  Jodie Howell, LPN
  Nicholas Johnson, MD, MSCI, FAAN
  Alissa Peters
  Christy Newman
   
• Stump the Expert: DM2*
  Charles Thornton, MD
   
• Living Your Best Life: A Community Panel for Individuals Living with DM2*
  Haley Martinelli
  Tom McPeek
  Lorraine Piechota
  Louis Vinnyey

Track 3: Caregivers & Self-care

This track was designed for family members, caregivers, or those who are their own caregiver; also appropriate for individuals living with DM1 or DM2.

Click here to watch all the Caregivers & Self-care Track Sessions from the 2021 MDF Annual Conference.

• Acceptance & Commitment: Strategies for Good Mental Health
  Christopher D. Graham, PhD, DClinPsychol
   
• Talking about DM with Children, Family Members, & Doctors
  Rebecca Axline, LCSW-S, APHSW-C
  Reagan Shivitz, BSN, RN-BC
  Sheetal Shroff, MD
  Cindy Vogtman
   
• Advocacy and Awareness Workshop - Get Ready for International Myotonic Dystrophy Awareness Day
  Kate Beck
  David Brand
  Lauren Brand
  Teresa Buffone
   
• Stump the Expert: Health Insurance
  Erin Bradshaw
  Amy Jackson, Patient Access Specialist
  Erin Springer, MSN
  Ryan Frame, Social Security Administration
   
• Living Your Best Life: A Community Panel for Unaffected Caregivers*
  John Cooley, JD
  Lois Oppenheim, PhD
  Suzanne Perkins, PhD

Track 4: Professionals

This year's virtual conference will have a dedicated Professional Track specifically designed for clinicians, researchers, and industry experts. Session topics were developed based on direct feedback from professionals.

Click here to watch all of the Professional Track Sessions from the 2021 MDF Annual Conference.

• Repeat Instability & Stabilization
  Peter Bialek, PhD
  Darren Monckton, PhD
  Christopher Pearson, PhD
   
• NIH Research Funding Opportunities & First Look at New DM Data from CDC & Marigold Foundation
  Emily Carifi, PhD
  Sarah Howe, MBA
  Glen Nuckolls, PhD
  Natalie Street, MS, CGC
   
• Mechanistic Aspects of the Heart & the CNS
  Thomas Cooper, MD
  Eric Wang, PhD
   
• Gene Editing & DM
  Vincent Dion, PhD
  Nan Zhang, PhD
   
• Research Updates on DM2 & RAN Proteins as a Therapeutic Target
  Monica Banez Coronel, PhD
  Matthew Disney, PhD
   
• Clinical Updates: Cardiac Management, DM Clinical Research Network, and Brain Manifestations of DM1
  Nick Johnson, MD, MSCI, FAAN
  Pradeep Mammen, MD
  Peg Nopoulos, MD
   

Click here to download a printable Conference Agenda PDF.
 

Thank You to Our Conference Sponsors