2021 Virtual MDF Annual Conference

Join us for the 2021 Virtual MDF Annual Conference!

September 10th & 11th, 2021

 

Click Here to Register!
 

The Myotonic Dystrophy Foundation (MDF) is pleased to announce the 2021 Virtual MDF Annual Conference is taking place September 10th & 11th!

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 record success at our first ever virtual Conference in 2020, this year MDF will offer a unique opportunity to learn, connect, support, and empower the DM community. We hope you will join us!

Your Conference Experience

A virtual conference is a little different than an in-person conference, as you might expect. MDF will help you understand how to use the web-based platform or application to make the most of your Conference experience. Some features to look forward to include:

  • An ability to schedule one-to-one and group video meetings with other conference attendees.

  • Opportunities to participate in live chats and polls.

  • Ways to interact with our sponsors and exhibitors in their virtual trade show booths and tables for DM related books, podcasts, groups, or websites. Non-profit entities and DM-focused Academic Research Labs may be eligible for a complimentary booth. If you're interested in hosting a booth, mark your interest during registration!

  • And much more!

After you register, you will receive additional guidance and reminders as the Conference gets closer to ensure you have an easy, fun, and educational experience. Don’t forget to check your email Spam and Junk folders for any Conference communications that accidently get filtered away from your inbox!

Agenda & Tracks

Click here to download a printable Conference Agenda PDF.

The Conference officially kicks off Friday, September 10th and ends Saturday, September 11th, with sessions running from 9:00 AM - 6:00 PM Pacific Time each day.

For the first time, the Conference will have a “soft open” on Thursday, September 9th that may include 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 will be offered on all three days.

Details are subject to change as session topics and speaker availability is confirmed.

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 will have a dedicated Professional Track specifically designed for clinicians, researchers, and industry experts.

The Conference will incorporate 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. When you indicate this is your first Conference in the registration form, we will know to send you reminders about this special first-timer event and other content to improve your Conference experience.

  • 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 (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!

Community Panels are back by popular demand! Attend panels for:

  • Individuals with DM1.

  • Individuals with DM2.

  • Caregivers.

  • Congenital DM Families.

  • Juvenile-onset Adults.

  • Military Veterans.

These sessions feature panels of individuals with experience, compassion, and knowledge to offer their peers, and hope to provide space for you to share your own stories, tips, and questions.

DM Type Specific Sessions, our agenda will also include a number of parallel sessions each specifically designed for the DM1 or DM2 community. These specialty tracks are still underdevelopment.

This page will be updated with more information on sessions and speakers as it becomes available.

Track 1: DM Type 1

This track was designed for individuals and families seeking to learn more about DM Type 1. Sessions are currently in development and speakers are being confirmed. Sessions may include:

  • 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
     
  • 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. Sessions are currently in development and speakers are being confirmed. Sessions may include:

  • DM2: Disease Development, Symptoms, and Management
    Johanna Hamel, 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
     
  • 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. Sessions are currently in development and speakers are being confirmed. Sessions may include:

  • 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
     
  • 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
    A Representative from the 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. Sessions are currently in development and speakers are being confirmed. Sessions may include:

  • Repeat Instability & Stabilization
    Peter Bialek, PhD
    Darren Monckton, PhD
    Christopher Pearson, PhD
     
  • 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
     
  • Research Funding Opportunities & First Look at New DM Data
    Emily Carifi, PhD
    Sarah Howe, MBA
    Glen Nuckolls, PhD
    Natalie Street, MS, CGC

Daily Agenda

Click here to download a printable Conference Agenda PDF. Subject to change as speakers and sessions are confirmed. Hover over each session for more information.

Thursday, September 9th

Time

Session

3:00 - 4:00 PM

Ask-the-MDF-Staff Live

4:00 - 5:30 PM

First Timers' Tea

Friday, September 10th

Time

Session

8:00 - 8:50 AM

Adaptive Yoga

9:00 - 9:50 AM

Welcome & State of the Foundation

10:00 - 11:15 AM

DM1: Disease Development, Symptoms, & Management

DM2: Disease Development, Symptoms, & Management

Acceptance & Commitment: Strategies for Good Mental Health

Repeat Instability & Stabilization

11:15 - 11:30 AM

Break

11:30 AM - 12:45 PM

Adaptive Strength Training

JOA: Getting to Know One Another

Exhibitor Showcase

Research Funding Opportunities & First Look at New DM Data

Research Poster Showcase

12:45 - 1:00 PM

Break

1:00 - 1:45 PM

Industry Updates Part 1

1:45 - 2:00 PM

Break

2:00 - 3:15 PM

State of DM1 Research & Ways to Engage

State of DM2 Research & Ways to Engage

Talking about DM to Children, Family Members, & Doctors

Mechanistic Aspects of the Heart & CNS

3:15 - 3:30 PM

Break

3:30 - 3:50 PM

Special Performance by Singer-songwriter Eric Hutchinson

4:00 - 5:00 PM

Facilitated Networking

DM1 DM2 Caregivers CDM Families JOA DM Professionals

Exhibitor Showcase

Saturday, September 11th

Time

Session

8:00 - 8:50 AM

Exercise & Movement Activity

Exhibitor Showcase

9:00 - 10:15 AM

Day 2 Welcome: Stories of Inspiration

10:15 - 10:30 AM

Break

10:30 - 11:45 AM

Clinical Trial Readiness Workshop

Clinical Trial Readiness Workshop

Advocacy & Awareness Workshop - Get Ready for International DM Awareness Day

Gene Editing & DM

11:45 AM - 12:00 PM

Break

12:00 - 12:50 PM

Sit Fit

JOA: Games & Networking

Exhibitor Showcase

Research Updates on DM2 from the Disney Lab & RAN Proteins as a Therapeutic Target

Research Poster Showcase

1:00 - 1:45 PM

Industry Updates Part 2

1:45 - 2:00 PM

Break

2:00 - 3:15 PM

Stump the Expert - DM1

Stump the Expert - DM2

Stump the Expert - Health Insurance

Clinical Updates: Cardiac Management, DM Clinical Research Network, & Brain Manifestations of DM1

3:15 - 3:30 PM Break

3:30 - 4:45 PM

Living Your Best Life: Community Panels

DM1 DM2 Caregivers CDM Families JOA Veterans

4:45 - 5:00 PM

Break

5:00 - 6:00 PM

Dance Party!

Networking Lounge Exhibitor Showcase

Click here to download a printable Conference Agenda PDF.

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 is thrilled to make this opportunity available at this year’s conference in a virtual format, in which special Web rooms will be 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 Poster Abstracts.

View the Abstracts!

Registration Types

Ticket Type

Early Bird Rate - through July 31

Regular Rate - starting August 1

Community Member (Invididuals living with DM, their caregivers, family, and friends, etc.)

$25 / Person

$40 / Person

Professional (Health Care Professional, Researcher, Industry Partner, etc.)

$125 / Professional

$160 / Professional

Please note, any Community Members enduring financial hardship are able to register at no cost. Select “Community Member – Free” option during registration. Individuals may also add a donation by selecting “Donate: Conference Challenge” after selecting their registration type.

Attendee Code of Conduct

We look forward to the conference every year and this year is no different. As always, we aim to create a positive atmosphere for all attendees. MDF values the diversity of opinions, experiences and perspectives in our community and we are committed to providing a safe and welcoming environment for all in attendance.

By registering for the 2021 Virtual MDF Annual Conference, you agree to abide by our Code of Conduct. (Click here to download a copy)

Cancellation & Refund Policy

We understand that circumstances and plans may change. MDF is able to offer registration cancellations and refunds made before Friday, September 3, 2021.

Additional Information

If you have registration questions or need assistance with registration, contact the Myotonic Dystrophy Foundation at 415-800-7777 or by email at info@myotonic.org.

Click here to view our Sponsorship opportunities. If you are interested sponsoring the 2021 Virtual MDF Annual Conference, please contact us at development@myotonic.org.

Click Here to Register!

Thank You to Our Conference Sponsors

Platinum Tier

Gold Tier

Silver Tier

Bronze Tier

 

Date(s): 
Thursday, September 9, 2021 to Saturday, September 11, 2021

© Myotonic Dystrophy Foundation. All rights reserved.