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!
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
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.
- 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
Platinum Tier
Gold Tier
Silver Tier
Bronze Tier
Agenda & Tracks
The Conference officially kicked off Friday, September 10th and ended Saturday, September 11th, with sessions running from 9:00 AM – 6:00 PM Pacific Time each day. Click here to download a printable Conference Agenda PDF.
For the first time, the Conference had a “soft open” on Thursday, September 9th that included our First Timers’ Tea to orient and welcome those attending the Conference for the first time, as well as entertainment. By popular demand, more networking, sponsorship, and exhibitor opportunities were offered on all three days.
Session topics were developed based on direct feedback from the DM community through the 2020 conference evaluation surveys, our recent Strategic Planning survey, support group participants, and callers to the MDF Warmline. This year’s virtual conference hosted a dedicated Professional Track specifically designed for clinicians, researchers, and industry experts.
The Conference will incorporated many traditional events and activities, including:
- The First Timers’ Tea, a networking event for those who have not attended a Conference before to orient you to the Conference, MDF, and the DM community.
- Welcome and State of the Foundation to learn about recent successes and future goals of the foundation, plus ways to get involved and help achieve the mission.
- Stories of Inspiration from the DM Community.
- Exercise & Movement Activities, professionally facilitated sessions with modifications for community members of all abilities.
- “Stump the Expert” sessions with leading DM scientists and clinicians.
- Meet the Board of Directors! Join a pair of MDF Board members eager to answer your questions and update you on the latest from MDF or visit them during the Exhibitor Showcase!. Click here to learn more about MDF’s Board Members and their commitment to the organization.
- Updates from DM Drug Developers.
- The Closing Dance Party! Want to rock out to our communiy’s favorite songs? Click here to listen to the 2021 Conference Party Playlist on Spotify!
By popular demand, the 2021 Conference incorporated new topics for MDF Community Panels for those: living with DM1; living with DM2; DM Caregivers; Congenital DM Families; Juvenile-onset Adults; and Military Veterans living with DM. These sessions featured panels of individuals with experience, compassion, and knowledge to offer their peers, and provided space for you to share your own stories, tips, and questions.