2024 MDF Regional Conferences

MDF Brought our Conference to Boston, MA

April 6, 2024
8:30 AM - 7:00 PM
Le Méridien Boston Cambridge

The DM Community Unites at the Second 2024 MDF Regional Conference

The second 2024 MDF Regional Conference took place on Saturday, April 6, 2024 at the Le Méridien Boston Cambridge hotel in Boston, MA. With over 160 registrants joining from 18 US States and 3 countries - we are thrilled that so many of our incredible members of our community could once again unite to advance the MDF mission of Community, Care, and a Cure!

MDF offers a special thank you to Massachusetts General Hospital and the Wheeler Muscular Dystrophy Research Lab, for making this event a success! Thank you also to Dyne Therapeutics for hosting a laboratory tour the Friday before the Conference. The tour took members of the DM Community through Dyne lab headquarters where Dyne leadership talked about their progress towards their drug development!

The following day's program included 14 educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities for networking and fun! Over 40% of attendees at this event were first-time MDF conference attendees who joined us to connect with other families new to the community, board members and support group facilitators. Attendee feedback on the impact of gathering in person was overwhelmingly positive, and further solidifies MDF Conferences as a wonderful way to connect with each other and MDF's mission of community, care, and a cure!

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Click here to learn more about the 2024 MDF Regional Conferences!

Agenda & Program

This MDF Regional Conference includes participation from local DM experts, researchers, and community members to provide a robust program including popular sessions from our past Annual Conferences. Scroll down this page find a list of session descriptions.

Note: The Regional Conference Sessions are not split into individual Community Tracks.

Looking for JOA Specific Sessions? Join us at our Conference in Los Angeles, CA, both of these events will feature a dedicated JOA space and program.

Saturday, April 6th
Time	Session
8:30 AM	Check-in Opens
9:00 - 10:00 AM	Breakfast
10:00 - 10:45 AM	Welcome & Introduction to DM Resources
10:45 - 11:00 AM	Break
11:00 - 11:45 AM	Clinical Trials: A User's Guide
11:45 AM - 12:00 PM	Movement Moment
12:00 - 12:15 PM	Break
12:15 - 1:00 PM	DM1 Overview	DM2 Overview	Research Showcase of DM1
1:00 - 2:00 PM	Lunch	Lunch Discussion with Avidity Biosciences (RSVP Required)	Lunch Discussion with Dyne Therapeutics (RSVP Required)
2:00 - 2:45 PM	An Overview of Genetic Testing and Myotonic Dystrophy	Life Hacks Community Panel	Exercise Considerations for Individuals with Myotonic Dystrophy
2:45 - 3:00 PM	Break
3:00 - 4:00 PM	Industry Updates
4:00 - 4:15 PM	Break
4:15 - 5:00 PM	Stump the Doctor
5:00 - 5:30 PM	Break
5:30 - 7:00 PM	Dinner & Dance Party!

General Session Descriptions

Welcome & Introduction to DM Resources
The Myotonic Dystrophy Foundation (MDF) works to enhance the quality of life of people living with myotonic dystrophy and to drive research focused on treatments and a cure. This session will provide a comprehensive overview of the work of MDF as well as the readily available tools and resources for the community. 

• The Myotonic Dystrophy Family Registry (MDFR)
• Research
• Toolkits and Publications
• Support Groups
• Other tools (Find-A-Doctor, Body Systems, Digital Academy, Dispatch) 

Clinical Trial Readiness 
Clinical Trial Readiness is the unofficial theme of the 2024 Regional Conferences. As academic and industry partners work to develop treatments and a cure for myotonic dystrophy (DM), it is more important now than ever that the DM community is ready to participate in trials. This talk will provide an overview of clinical trials and help attendees think about how to prepare for upcoming trials and studies: 

• What are clinical trials?
• What is the process to get to clinical trials (discovery, preclinical research, preclinical development, clinical research)
• Phases of clinical trials
• What a clinical trial is like for a participant
• What are natural history studies?
• Important do’s and don’ts of clinical trials
• Other frequently asked questions (FAQs)

Movement Moments
MDF is proud to support the Myotonic Dystrophy in Motion movement which aims to unify, inspire, and encourage the international DM community to start moving. Movement can improve both the physical and mental well-being of people living with myotonic dystrophy. Movement moments are a great tool to break up sitting during sessions and could include a variety of activities:

• Stretching
• Chair yoga
• Tai Chi

Stump the Doctor
Stump the Doctor Sessions at the conference are an opportunity for community members to meet a leading clinical expert in myotonic dystrophy and ask their most persistent, challenging questions. These sessions are open Q&A format. Can you stump the doctor?

Industry Updates
During this session, representatives from biotechnology and pharmaceutical companies will provide updates on their drug development efforts in the DM field.

Breakout Session Descriptions

DM1 Overview
This session is for those new to the DM1 community and those seeking a refresher. A leading expert will provide a comprehensive overview of DM1:

• Causes and genetics underlying DM1
• How and when in life it can affect different systems of the body
• Tips for self-management of symptoms
• How to best work with your clinical care team to ensure the best quality of life 

DM2 Overview
This session is for those new to the DM2 community and those seeking a refresher. A leading expert will provide a comprehensive overview of DM2:

• Causes and genetics underlying DM2
• How and when in life it can affect different systems of the body
• Tips for self-management of symptoms
• How to best work with your clinical care team to ensure the best quality of life 

Research Showcase of DM1 
This session will provide an overview of research basics and the importance of research and then dive into the exciting DM research being done at Mass Gen including their biomarker study and mice models.

Genetic Testing 
Join this session to learn about genetic testing and myotonic dystrophy. You’ll get more information on what a genetic counselor is, the risks and benefits of testing, and finding a lab to get tested.

Community Discussion Panel 
The Community Discussion Panel at the conference will be sessions led by MDF volunteer community leaders. Each regional conference will have a committee comprised of local community leaders who will help select panelists and topics. Examples of panel topics include: 

• Life hacks
• CDM: What to do before your child turns 18
• Unaffected caregivers 

Entertainment and Connection 
MDF understands the importance of community and connection. We aim to create unique opportunities in safe and welcoming environments for attendees to connect and engage with each other. This could include a variety of activities:

• Networking buddy lunch
• Dance party
• Networking and social hour 

Questions?

Reach out to MDF by emailing info@myotonic.org or calling 415-800-7777.