2024 MDF Regional Conferences

MDF is Bringing our Conference to Seattle, WA

June 1, 2024
8:30 AM - 7:00 PM
Westin Seattle 
1900 5th Ave., Seattle, WA 98101

The DM Community Unites at the Sixth 2024 MDF Regional Conference

The sixth 2024 MDF Regional Conference took place on Saturday, June 1, 2024 at Westin Seattle in Seattle, WA. With over 125 registrants joining from 12 US States and 2 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 the Seattle Wellstone Center, for hosting us.

The day's program included 14 educational sessions exploring research, mental health, exercise, symptom management, and other critical topics for DM families, plus opportunities networking and fun! Over 60% of attendees at this event were first-timers from across the country that 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.

Saturday, June 1st
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	DM Research: What You Need to Know About Clinical Trials		Life Hacks Community Panel
11:45 AM - 12:00 PM	Movement Moment
12:00 - 12:15 PM	Break
12:15 - 1:00 PM	DM1: What You Need to Know	DM2: What You Need to Know	How Myotonic Dystrophy Affects the Heart
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	Sleep Disorders in Myotonic Dystrophy	Genetic Testing for Myotonic Dystrophy	Rehabilitation Medicine in Myotonic Dystrophy
2:45 - 3:00 PM	Break
3:00 - 3:45 PM	Industry Updates
3:45 - 4:00 PM	Break
4:00 - 5:00 PM	Stump the Doctor DM1 & DM2
5:00 - 5:30 PM	Break - Networking & Pre-Dinner Drinks
5:30 - 7:00 PM	Dinner & Dance Party!

General Session Descriptions

Welcome & Introduction to DM Resources
The Myotonic Dystrophy Foundation & Jeffrey S. Chamberlain, Ph.D., University of Washington 
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) 

DM Research: What You Need to Know 
Leo Wang, MD, PhD, University of Washington 
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
John Day, MD, PhD, Stanford University
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
Avidity Biosciences, Dyne Therapeutics, ARTHEx Biotech, Juvena Therapeutics, AMO Pharma, & PepGen 
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 & DM2: What You Need to Know
John Day, MD, PhD, Stanford University, & Leo Wang, MD, PhD, University of Washington
This session is for those new to the DM community and those seeking a refresher. A leading expert will provide a comprehensive overview of DM:

• Causes and genetics underlying DM
• 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 

Sleep Disorders in Myotonic Dystrophy 
Jeremy Chan, MD, University of Washington 
Sleep is a major concern experienced by the DM community. This session will cover sleepiness and other sleep disturbance considerations for both DM1 and DM2:

• How does DM affect sleep?
• The latest research on DM and sleep
• Best practices for care, monitoring, and self-management
• How common are sleep issues in DM and what are common issues?

How Myotonic Dystrophy Affects the Heart 
David S. Owens, MD MS, University of Washington 
This session should cover cardiac considerations for both DM1 and DM2:

• The latest research on DM and the heart
• Best practices for care, monitoring, and self-management
• This session will cover cardiac considerations for both DM1 and DM2:
• How common are heart issues in DM and what are common issues?

Genetic Testing for Myotonic Dystrophy 
Shawna Feely, MS, CGC, Sea Child Hospital 
Myotonic community members often contact the Foundation with questions about genetic testing. This session will provide a comprehensive overview of genetic testing:

• What is genetic testing?
• What is a genetic counselor?
• The risks and benefits of testing
• Finding a lab to get tested

Rehabilitation Medicine in Myotonic Dystrophy 
Nassim Rad, MD, University of Washington 
This session will provide a comprehensive overview of occupational therapy and how individuals with DM and their families can utilize this form of healthcare and the services it provides. This session should cover the following:

• What is occupational therapy?
• Common issues with moving, toileting, and eating for adults and children
• Common adaptation, task alteration, or environmental changes individuals with DM could use to make daily life easier

Community Discussion Panel 
Mark Coplin & Cindy Hubert
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 

Lab Tour at The Seattle Wellstone Center

• Date & Time: May 31st from 1:00 PM to 2:30 PM
• Location: The Seattle Wellstone Center, 850 Republican Street, Seattle WA 98109

 

Questions?

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