2023 MDF Annual Conference

Thu Sep 07 2023 at 08:30 am to Sat Sep 09 2023 at 08:30 pm

Renaissance Washington, DC Downtown Hotel | Washington

Myotonic Dystrophy Foundation
Publisher/HostMyotonic Dystrophy Foundation
2023 MDF Annual Conference
The Myotonic Dystrophy Foundation (MDF) invites you to register for the 2023 MDF Annual Conference!
About this Event

MDF invites you to attend the 2023 MDF Annual Conference - sometimes called the “DM family reunion” – kicking off with MDF Advocacy Day on Capitol Hill on Thursday, September 7th, where we will meet with Members of Congress and their staff to advocate for myotonic dystrophy research funding and awareness. Conference sessions will begin on Friday, September 8th, and continue through Saturday, September 9th, 2023, at the Renaissance Washington, DC Downtown Hotel. (The Renaissance will transition into a Westin Hotel prior to our conference.)

For those arriving early, we welcome you to join us for a Thursday evening Welcome Reception & Advocacy Awards Presentation, where we will recognize Senators Tim Kaine (D-VA) and Cynthia Lummis (R-WY) and their staff for their friendship and support of the myotonic dystrophy community.

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, wellness, and fun.

Join us in Washington, DC, for our most anticipated event of the year!

Click here to check out our 2022 MDF Annual Conference Highlight Video!


Community Registration includes access to general sessions, community sessions, meals, and other activities.

Community members may attend Professional Track sessions, however priority access to these sessions will be given to those registered as Professionals.

Conference Registration does NOT include your hotel room. See the Hotel & Room Block section below for information about staying at the Renaissance Washington, DC Downtown Hotel and instructions on how to book a room at MDF’s discounted rate.

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

  • Early Bird ends June 19th.
  • Regular Registration ends August 25th.
  • Late Registration accepted until September 1st.

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.


There are two opportunities to request financial support to attend the conference in person this year.

MDF Scholarships

Sponsored in part by Avidity Biosciences, MDF Scholarships are available for a few individuals living with DM and a caregiver who demonstrate financial need. We are excited to share that this year’s scholarships are open to international and US based applicants. Please note that priority will be given to those who have never attended an in-person MDF Annual Conference.

These scholarships will cover conference registration fees, three nights at the hotel (or four nights for those who register and attend MDF Advocacy Day on Capitol Hill), and a portion of your travel expenses (e.g., transportation). Our international scholarships will cover travel expenses at a higher rate.

Click here to learn more and apply for an MDF Scholarship!

MDF Scholarship Rules:

  • All MDF Scholarship applications must be submitted by Thursday, June 1 .
  • Scholarship applications will be reviewed on a weekly basis, awarded each Friday on a first come, first served basis
  • Awardees must accept an offered scholarship within two weeks from the date of award by registering for the conference
  • Awardees who do not accept the award within the stated two-week time frame, may risk loss of the award
  • Awardees who accept the scholarship, have travel and rooms booked, but who do not attend the Annual MDF Conference without an approved excusal will be ineligible to apply for future scholarships of any type for a period of up to five-years
  • Awardees who miss their scheduled transportation unrelated to weather, or system delays, will be responsible for the resulting difference in transportation ticket prices.
  • Attendance at MDF Advocacy Day on Capitol Hill is required for awardees who secure a fourth night at the hotel under the MDF scholarship program.

For more details and to apply for an MDF Scholarship, click here!

JOA Ambassador Scholarship Program

The Cohen Family Trust and AHLIFE (A Healthy Life For Everyone), through the 2023 Ambassador Scholarship Program, have collaborated with MDF to help defray some expenses to attend the 2023 Annual Conference. JOA Ambassador Scholarships will reimburse some of the conference registration fee and hotel expenses. Applicants must be juvenile-onset adults (JOA) or have a congenital myotonic dystrophy (CDM) diagnosis.

JOA Ambassador Scholarship applications must be completed and received by midnight, Monday July 17, 2023.

Click here for more information and to apply!


Currently in development! The program includes general, educational, mental health and wellness sessions, meals, and other activities. General sessions are held in the main ballroom and are for all attendees.

  • Welcome & State of the Foundation.
  • Industry Updates.
  • Stories of Inspiration & Awards.

In addition to our general sessions, MDF is working to tailor educational sessions to different audiences within the DM community:

  • DM1 – for individuals & families living with Myotonic Dystrophy Type 1.
  • DM2 – for individuals & families living with Myotonic Dystrophy Type 2.
  • Caregivers - for caregivers and anyone living with any type of DM.
  • JOA – for Juvenile-onset Adults (JOAs) only. Parents and family members are invited to attend another track.
  • Professionals – for clinicians, researchers, industry, and other DM professionals.

Additional sessions and activities will also cover:

  • CDM – for individuals and families living with Congenital Myotonic Dystrophy
  • Mental Health – for those who want to learn more about tools and mental health support
  • Wellness – for those who want to explore wellness options such as yoga, mindfulness and meditation

Session, track, and speaker information coming soon!

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 other longtime MDF Annual Conference attendees to help ensure that your first experience is a complete success.

Dining & Dietary Needs. During Conference Registration, you will be asked about your plans to attend certain receptions and meals to help MDF and the Renaissance Washington, DC Downtown Hotel tailor meals to any dietary requirements and anticipate how much food to prepare. All in-person registrations include the following meals:

  • Thursday Welcome Reception & Advocacy Awards Presentation (Hors d’oeuvres & Beverages).
  • Friday Breakfast.
  • Friday Networking Lunch.
  • Friday Dinner & Entertainment.
  • Saturday Breakfast.
  • Saturday Lunch.
  • Saturday Closing Dinner & Dance Party.
  • Some break time snacks & coffee/tea are also included.


To take advantage of the Washington, DC location this year, MDF will be hosting MDF Advocacy Day on Capitol Hill to meet with legislators and their staff to advocate for improved care and a cure for people living with DM. The myotonic dystrophy community must raise our voices to make a change! When we speak up, we influence research funding budgets, the development of new therapies, clinical trial efforts, and initiatives to improve the quality and cost of care. Special thanks to our Lead Conference Sponsor, Avidity Biosciences, for sponsoring the MDF Advocacy Day on Capitol Hill Community Breakfast & Advocate Training!

MDF Advocacy Day on Capitol Hill attendees will be required to arrive on Thursday, September 7th to participate in our congressional meetings and planned Senate myotonic dystrophy research briefing. The day will begin with theCommunity Breakfast & Advocate Training, sponsored by Avidity Biosciences where we will review everything you need to know to have a successful congressional meeting. Following our breakfast training, attendees will board a shuttle bus to Capitol Hill. (MDF shuttle busses will be running between Capitol Hill and the Hotel throughout the day.) Once on Capitol Hill, groups of attendees organized by state and congressional districts will meet with their elected officials to request support for our research funding priorities.

In preparation of MDF Advocacy Day on Capitol Hill, attendees will be connected with members of the MDF National Advocacy Committee, who will help coordinate our meeting requests to ensure there is only one MDF meeting request per congressional office.

The deadline to add MDF Advocacy Day on Capitol Hill to your registration is June 3, 2023. Please note that prior to departing for Capitol Hill participants must attend the Breakfast & Advocate Training, sponsored by Avidity Biosciences.

The following schedule is subject to change:

  • 9:00 – 10:30 AM - Breakfast & Advocate Training at the Renaissance Hotel, sponsored by Avidity Biosciences.
  • 11:00 AM - First bus leaves the Renaissance Hotel
  • 11:15 AM – 3:00 PM - Meetings with your legislators
  • 12:00 - 1:00 PM - U.S. Senate Lunch Briefing on Myotonic Dystrophy Research with Keynote Speaker U.S. Senator Amy Klobuchar (D-MN) Invited
  • 4:00 PM - Last bus leaves Capitol Hill
  • 6:00 PM - Welcome Reception & MDF Advocacy Awards Presentation Recognizing U.S. Senators Tim Kaine (D-VA) and Cynthia Lummis (R-WY) Invited


New this year! Be the bridge between the DM Community and Research Professionals! In response to feedback we received from our community and professionals, we’ve designed some new and exciting ways to get to know one another. The Conference Networking Buddies system pairs DM Professionals and people living with myotonic dystrophy and their caregivers. MDF will provide assigned seating during lunch on Friday so you can get to know your conference buddy! There will be additional opportunities to connect with your buddy during snack breaks, cocktail hours, or poster sessions throughout the conference.

More information will be sent to you if you join the Conference Networking Buddies program during registration.


Sharing the latest research is a key feature of the MDF Annual Conference. Poster presentations illustrating research projects are displayed throughout the conference and a Friday Showcase will provide attendees unopposed time to view them.

MDF urges doctoral students and postdoctoral researchers working on research of any type of DM, as well as representatives of companies and researchers developing therapies for DM to submit abstracts to this unique event.

A request for poster abstracts and guidelines on poster submissions will be posted on May 12th. Abstract submissions will be accepted beginning May 12th and close July 7th with decisions announced by July 29th. Please contact Dr. Nadine Skinner, MDF Research Coordinator, at [email protected], for any research poster related questions.


Embrace the excitement of one of the world’s most remarkable urban hubs at the Renaissance Washington, DC Downtown Hotel. Located minutes away from historical landmarks, world renowned museums, and vibrant city life, the best of DC is at your doorstep.

The significantly discounted room block will fill up quickly, so reserve your room as soon as possible to secure the best rates!  MDF has secured a special group discounted rate at the Renaissance Washington, DC Downtown Hotel starting at $165 USD per night plus tax. Maximum guest capacity for each room may depend on room type selected. To receive the group rate, please book by Wednesday, August 16th.

Click Here to Book Your Significantly Discounted Room Reservation!

You may also book your room anytime by calling the Reservations department at 202-898-9000 or 800-393-2505 and referencing the “Myotonic Dystrophy Conference” room block.

You will have the option to request an accessible room at the time of booking, in the screen where you input your contact information.

Registering for the conference does not reserve your hotel room. Click Here to Book Your Significantly Discounted Room Reservation!

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


2023 MDF Annual Conference attendees traveling by plane will arrive in Washington, DC at one of the following airports:

  • Ronald Reagan International Airport (DCA) – 5 miles from hotel
  • Dulles International Airport (IAD) – 28 miles from hotel
  • Baltimore/Washington International Thurgood Marshall Airport (BWI) – 34 miles from hotel

Visitors seeking transportation to the Renaissance Washington, DC Downtown Hotel have a variety of options, including taxi service, ride-sharing apps, and public transportation. Please note that attendees are responsible for arranging all of their own ground transportation to and from the airport and throughout the duration of the conference.

Find additional transportation information here.


MDF is working to secure a childcare partner for the 2023 MDF Annual Conference in Washington, DC. Spaces will be limited and a separate registration ahead of the Conference will be required.

More information coming soon!


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 Friday, August 10, 2023.

Hotel room cancellations must be made directly with the hotel.  You will be charged 1 night room and tax if the cancellation is within 3 days of arrival, or if you fail to show up on your arrival date.


Find the latest program and speaker updates as they become available on the MDF website. 

Interested in taking in more of Washington, DC?  Click here for a list of local sights and attractions to visit outside of the conference.

Questions? If you have registration questions or need assistance with registration, contact MDF at 415-800-7777 or by email at [email protected].


For questions on corporate sponsorship opportunities at the 2023 MDF Annual Conference, please contact MDF at [email protected].

Learn more about MDF Annual Conference Sponsorship opportunities!

An additional thank you to Avidity Biosciences for sponsoring Storytelling Impact Training for our community panelists and advocates.


Event Photos

Event Photos

Event Venue & Nearby Stays

Renaissance Washington, DC Downtown Hotel, 999 9th Street Northwest, Washington, United States


USD 0.00 to USD 300.00

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