2024 MDF Regional Conferences

MDF is Bringing our Conference to Los Angeles, CA

May 18, 2024
8:30 AM - 7:00 PM
Covel Commons
330 De Neve Dr, Los Angeles, CA 90095

The DM Community Unites at the Fifth 2024 MDF Regional Conference

The fifth 2024 MDF Regional Conference took place on Saturday, May 18, 2024 at Covel Commons on the UCLA campus in Los Angeles, CA. With over 125 registrants joining from 9 US States and 3 countries - we are thrilled that so many 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 UCLA Health, for hosting us.

The day's program included 17 educational sessions exploring research, mental health, exercise, symptom management, and other critical topics for DM families, plus opportunities networking and fun! Over 40% 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 will include 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 will not be split into individual Community Tracks.

Click here to view the full Program!

Saturday, May 18th
Time	Session
8:30 AM	Check-in Opens
9:00 - 10:00 AM	Breakfast
10:00 - 10:45 AM	Welcome & Introduction to DM Resources		JOA: Getting to Know You & Ice-Breaker Games
10:45 - 11:00 AM	Break
11:00 - 11:45 AM	DM Research: What You Need to Know	Mental Health and DM		JOA: Stump the Doctor
11:45 AM - 12:00 PM	Movement Moment
12:00 - 12:15 PM	Break
12:15 - 1:00 PM	DM Research: What You Need to Know About Clinical Trials	Sleep and Breathing in Myotonic Dystrophy		JOA: Let's Talk About Feelings
1:00 - 2:00 PM	Lunch				Lunch Discussion with Avidity Biosciences (RSVP Required)(Tentative)	Lunch Discussion with Avidity Biosciences (RSVP Required) (Tentative)
2:00 - 2:45 PM	How Myotonic Dystrophy Affects the Heart	Community Panel: Life Hacks		JOA: Movement Moment
2:45 - 3:00 PM	Break
3:00 - 3:45 PM	Industry Updates			JOA: Games / Karaoke
3:45 - 4:00 PM	Break
4:00 - 5:00 PM	Stump the Doctor: DM1
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 & Perry Shieh, MD, PhD, UCLA Health 
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 About Clinical Trials
Perry Shieh, MD, PhD, UCLA Health 
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: DM1 & DM2
John Day, MD, PhD, Stanford University & Payam Soltanzadeh, MD, UCLA Health
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 & Payam Soltanzadeh, MD, UCLA Health
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 & 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 

Community Discussion Panel
Sarah Berman, John Cooley
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 

Mental Health and DM
Melissa M. Dixon, PhD, MS, University of Utah 
A leading expert will provide a comprehensive overview of mental health & DM, including:

• Provide a comprehensive understanding of mental health.
• Tips for managing mental health and DM.
• An interactive Q&A.

Sleep and Breathing in Myotonic Dystrophy 
Ravi S. Aysola, MD, UCLA Health 
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 
Daniel Cruz, MD, PhD, UCLA Health 
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?

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 

JOA Session Descriptions

Stump the Doctor
Perry Shieh, MD, PhD, UCLA Health 
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?

Let's Talk About Feelings
Melissa M. Dixon, PhD, MS, University of Utah
JOAs will have the opportunity to join facilitator, Dr. Dixon, for a discussion on their experiences and connect with peers.

Movement Moment 
Lucie Shiffman, Senior Community Engagement Manager, MDF
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

Games / Karaoke
Ann Woodbury, Co-Facilitator of the MDF JOA Warriors Support Group
Calling all JOAs! Join us for the highly requested karaoke and games session. MDF is excited to provide this opportunity for connection at the Conference.

Questions?

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

Register Now!