2022 MDF Annual Conference

Time Remaining!

Join us for the 2022 MDF Annual Conference!

September 9th & 10th

Paradise Point, San Diego, CA

About the MDF Annual Conference

MDF invites you to attend the 2022 MDF Annual Conference - sometimes called the “family reunion” - from Friday, September 9th through Saturday, September 10th, 2022, at Paradise Point in San Diego, CA. For those arriving early, we welcome you to join us for a Thursday evening reception. For those unable to attend in-person, we welcome you to join us virtually! Please note that not all sessions will be recorded or made available to virtual attendees. Information on virtual and recorded sessions coming soon.

This year's program includes educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities for formal and informal networking and fun. Click here to find information about our past conferences.

Join us at Paradise Point in San Diego's beautiful Mission Bay for the crown jewel of MDF events!

Registration Types & Fees

Community Registration includes access to general sessions, community tracks, most meals, and other activities. Due to limited capacity, only Professional Registrations will grant access to Professional Track sessions.

Registration does NOT include a hotel room. See the Hotel & Room Block section below for information about staying at Paradise Point and find a link to book a room at MDF’s discounted rate.

We encourage all attendees to register early to take advantage of our discounted rates:

  • Early Bird extended to June 26th. SOLD OUT.
  • Regular Registration ends August 31st. SOLD OUT.
  • Late Registration accepted until September 10th. SOLD OUT.
  • Virtual Registration accepted until September 10th.

Program & Agenda

Session topics were developed based on direct feedback from the DM community through the 2021 conference evaluation surveys, our recent Strategic Planning survey, support group participants, and callers to the MDF Warmline. Click here to download a PDF of the 2022 MDF Annual Conference Program Book!

Movement Moments

New this year and in line with MDF’s new Myotonic Dystrophy In Motion initiative, Movement Moments will provide short movement activities for all conference attendees, lasting 2-3 minutes each. They will be held in the main ballroom between breakfast and morning general sessions, and again between lunch and industry updates on Friday and Saturday. These community activities, designed by movement experts and community members, emphasize the power of movement in every person’s life and provide small examples of ways to move safely, joyfully, and together. Each of the four Movement Moments will focus on one of the four types of movement – endurance, strength, mobility, and balance. All are welcome to participate or simply observe, and adaptations will be described.

MDF Welcomes Families with Children!

Parents and guardians of children with DM -- especially children with congenital myotonic dystrophy (CDM) -- have special needs, interests, and concerns. MDF is doing its part to help meet those needs throughout the conference in a variety of ways. After a long hiatus, MDF is offering FREE childcare; conference registrants must also register with the childcare provider! (More details below!) A number of experts speaking during breakout sessions have extensive pediatric experience, and their presentations will include a focus on the needs of infants and children living with DM:

  1. Chamindra Konersman, MD, will be presenting on “Understanding DM1: Disease Development & Symptom Management.”
  2. Samar Muslemani, OT, MsC, will be presenting on “Making Daily Life Easier with an Occupational Therapist.”
  3. Melissa McIntyre, PT, will be presenting on “Physical Therapy, Mobility & Adaptive Sports.”
  4. Christopher Knauf, Esq, will be presenting on “Disability Rights & Resources.”
  5. Acclaimed psychologist Missy Dixon, PhD, along with MDF Board Member, Belen Esparis, MD, who is the parent of a child living with DM, and Lori Planco, BSBA, will lead a session on “Meaningful Communication & DM.”

Additionally, there will be a room set aside specifically for parents and guardians during the Friday evening networking hour. And on Sunday, AMO Pharma will be hosting a brunch just for CDM families!

We hope that all families living with DM, including those with CDM or other young children, will join us at the 2022 MDF Annual Conference.

Daily Agenda

Hover over each session for more information.

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

Click here to download a PDF of the 2022 MDF Annual Conference Program Book.

Learn the color coded legend: DM1 Track. DM2 Track. Caregivers & Self-care. JOA. Professionals. General. General. General.


Thursday, September 8th



11:00 - 4:00 PM

Avidity Biosciences Tour

Early Arrival Coffee Bar & Networking

Conference Registration

4:00 - 6:00 PM


6:00 - 8:00 PM

Early Arrival Reception

Friday, September 9th



8:00 - 8:50 AM

Professional Track Breakfast

9:00 - 9:50 AM

First Timers' Tea

Considerations & Open Discussions of Exercise Impact on Clinical Trials & Everyday Health

10:00 - 10:50 AM

Friday Breakfast

11:00 - 11:45 AM

Welcome & State of the Foundation

11:45 AM - 12:00 PM


12:00 - 1:15 PM

Understanding DM1: Disease Development & Symptom Management

Understanding DM2: Disease Development & Symptom Management

Making Daily Life Easier with an Occupational Therapist

Getting to Know You!

Future Directions of DM Research - Part 1

1:15 - 1:30 PM


1:30 - 2:30 PM

Networking Lunch

MDF Fellows (Past & Present) Networking Lunch

2:30 - 3:30 PM

Industry Updates Part 1

3:30 - 3:45 PM


3:45 - 5:00 PM

Disability Rights & Resources

Physical Therapy, Mobility & Adaptive Sports

Bag-o-Stuff Games

Future Directions of DM Research - Part 2

5:00 - 5:15 PM


5:15 - 6:15 PM

DM1 Networking

DM2 Networking

Caregiver Networking

Dinner & a Movie

DM Professionals Networking

6:15- 6:30 PM


6:30 - 8:30 PM

Welcome Reception

MDF Scientific Advisory Committee Meeting

Saturday, September 10th



8:00 - 8:50 AM

Professional Track Breakfast

9:00 - 9:50 AM

Saturday Breakfast

Research Dataset Presentations

10:00 - 10:50 AM

Stories of Inspiration from the DM Community

11:00 AM - 12:15 PM

Community Panels: Navigating Life with DM

DM1 DM2 Male Caregivers Female Caregivers Grief (Living with DM) Grief (Unaffected)

Let’s Talk About Feelings

12:15 - 12:30 PM

Snack Break

12:30 - 1:45 PM

The Wide World of Research & Securing Funding to Move Us Closer to A Cure

DM2: The Brain & the Muscle

Yoga & Games

1:45 - 2:00 PM


2:00 - 3:00 PM

Networking Lunch

3:00 - 4:00 PM

Industry Updates Part 2

4:00 - 4:15 PM


4:15 - 5:30 PM

Stump the Doctor: DM1

Stump the Doctor: DM2

Meaningful Communication & DM: A Panel Discussion

Stump the Doctor: JOA

5:30 - 6:30 PM

Exhibitor and Research Poster Showcase & Cocktail / Mocktail Reception

6:30 - 8:30 PM

Closing Dinner & Dance Party!

Sunday, September 11th



9:00 - 11:00 AM

Congenital Myotonic Dystrophy (CDM) Family Networking Breakfast, Sponsored by AMO Pharma.


New to the MDF Annual Conference?

MDF offers a First Timers' Tea for first-time attendees early Friday morning. MDF will partner interested first time attendees with MDF Board members, Support Group Facilitators, and others who have attended many MDF Annual Conferences to help ensure that your first experience is a complete success.

During Conference Registration you will be asked about your plans to attend certain receptions and meals to help MDF and Paradise Point tailor meals to any dietary requirements and anticipate how much food is needed. All in-person registrations include the following meals:

  • Thursday evening reception (hors d’oeuvres & beverages).
  • Friday breakfast.
  • Friday lunch.
  • Friday evening reception (hors d’oeuvres & beverages).
  • Saturday breakfast.
  • Saturday lunch.
  • Saturday dinner.
  • Some break time snacks & coffee/tea are also included.

Hotel & Room Block

Voted among the top 20 resorts in Southern California, Paradise Point hosts the 2022 MDF Annual Conference! Located in sunny San Diego, California, Paradise Point is on a 44-acre island tucked away in gentle Mission Bay, minutes from the heart of downtown San Diego. Paradise Point offers a secluded island escape with all the comforts of a top hotel.

Registering for the conference does not reserve your hotel room.

Hotels around San Diego are selling out quickly, book your hotel today! Although MDF’s special discounted room rate at Paradise Point has ended, some rooms may still be available at regular rates. Click here to book a regular rate room at Paradise Point! Please note: If you for have already booked a room at Paradise Point but for unforeseen reason need to cancel your reservation, please contact MDF first so we can facilitate a transfer to someone else that would like a room on the property under our group rate.

MDF has secured a 2nd discounted room rate at the nearby Dana Hotel with rooms as low as $229 a night as of August 12th! The Dana may be able to provide a free shuttle to the conference property. Please let us know if you book a room at the Dana so we are aware of your accommodation. To book a room at the Dana, please call 800-445-3339 and mention “Myotonic Dystrophy Foundation” to receive the discounted rate. There are limited rooms available and the discounted rate will NOT be available online so please call before August 25th! Click here to learn more about the Dana Hotel.

Interested in other accessible options in the area? Find more choices at AccessibleGo.

Discounted Scooter & Wheelchair Rental

Harmony Home Medical Supply is offering MDF Annual Conference attendees 15% off rental and a discounted delivery fee of $55 (down from $75 regular price) to Paradise Point. Interested attendees just have to call Harmony Home Medical at (858)560-8177, state that they are with the MDF Conference, and the sales staff will apply the discount to the order. Attendees who prefer to submit an online request, just need to make sure they state they are with the MDF Conference in the comments section of the form. Click here to view all the Scooters & Wheelchairs available for rent!


2022 MDF Annual Conference attendees traveling by plane will arrive in San Diego at the San Diego International Airport (SAN). Visitors seeking transportation to Paradise Point have a variety of options, including taxi service, ride-sharing apps, and public transportation. Conference attendees are responsible for making their own airfare and transportation arrangements to and from the hotel. MDF cannot reimburse travel, hotel accommodations, or parking expenses for Conference participants. Find additional lodging & transportation information here.


Free childcare will be offered at the 2022 MDF Annual Conference! We are pleased to announce MDF has enlisted Playtime Pros to provide dedicated childcare Friday and Saturday from 9 AM to 7 PM each day. Space is limited and Conference registration is required. Click here to learn more about PlayTime Pros.

Registration Cancellation & Refund 

We understand that circumstances can change. MDF contracts for conference presenters, travel, and hotel services nine to twelve months in advance, and adjusts those contracts based on registrations. We are therefore unable to process registration cancellations made after Tuesday, August 19, 2022. Hotel room cancellations must be made directly with the hotel.

Additional Information

Check back for the latest program and speaker updates as they becomes available. If you have registration questions or need assistance with registration, contact MDF at 415-800-7777 or by email at info@myotonic.org.

Thank You to Our Conference Sponsors

Diamond Tier

Platinum Tier

Gold Tier

Silver Tier

Bronze Tier


Friday, September 9, 2022 to Saturday, September 10, 2022

© Myotonic Dystrophy Foundation. All rights reserved.