Community Sessions - 2025 MDF Conference | Myotonic Dystrophy Foundation

Join Us at the 2025 MDF Conference!

The Myotonic Dystrophy Foundation invites you to attend the 2025 MDF Conference in Indianapolis, Indiana from May 2nd to May 4th! Sometimes called the “DM family reunion” - the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). 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! Learn about Community Registration for the 2025 MDF Conference! >>>

Community Tracks and Sessions

Our program includes general, educational, mental health and wellness sessions, meals, and other activities.

General Sessions

The 2025 MDF Conference will incorporate many traditional events and sessions such as updates on myotonic dystrophy drug development, highlights of recent successes and future goals of the Foundation, and inspiring stories from the community.

Welcome & State of the Foundation
MDF leadership and Board of Directors are eager to share exciting updates about the state of Foundation, International Myotonic Dystrophy Awareness Day, and the MDF strategic plan.
Stories of Inspiration from the DM Community
A celebration of the DM community and awards presented for Kayla Vittek Memorial Award for Outstanding Community Advocate, Lifetime Achievement Award and other inspiring stories from our community.
Industry Updates - Presented in Partnership with EuroDyMA
Representatives from biotech and pharma companies provide updates on their drug development efforts in the DM field.
First Timers' Tea
Join MDF early Friday morning for a First Timers' Tea! Interested first time attendees will be partnered with MDF Board members, Support Group Facilitators, and other longtime MDF Conference attendees to help ensure that your first experience is a complete success.

DM Type 1

This track was designed for individuals and families living with myotonic dystrophy type 1 (DM1).

Understanding DM1: From Genetics to Care and Everything in Between
This session provides an essential understanding of Myotonic Dystrophy Type 1 (DM1), making it ideal for newly diagnosed individuals and those seeking to refresh their knowledge. Attendees will learn about the causes and genetics behind DM1, how the condition affects different systems of the body over time, and strategies for self-managing symptoms and building a strong clinical care team.
Breathe Easy, Sleep Sound: Managing Sleep and Pulmonary Health with DM1
In this session, attendees will explore how DM1 impacts sleep and respiratory health, two critical areas often affected by the disease. Hear from a leading expert about common issues such as sleep disturbances and pulmonary complications, share the latest research findings, and provide practical advice for monitoring and managing these symptoms at home.
Keeping Your Heart in Check: DM1’s Impact and Care Tips
This session focuses on the cardiac complications associated with DM1. Participants will gain a deeper understanding of how DM1 affects heart function, the most common heart-related issues, and the best practices for self-management and care. The session will also cover the latest advancements in DM1 cardiac research, helping attendees stay informed about new developments.
DM1 Stump the Doctor
In this open Q&A format, participants get the chance to ask a leading expert in DM1 their toughest questions. Can you stump the doctor?
Genetics Unveiled: Testing, Understanding Results, and Family Planning with DM1
This session offers a comprehensive look at the role of genetic testing and counseling in DM1. Attendees will learn about the testing process, how to interpret genetic results, the importance of working with a genetic counselor, and family planning considerations for those impacted by DM1.
DM1 Community Panel: Sharing Hope and Life Hacks
This panel session brings together members of the DM1 community to share personal experiences, practical tips, and life hacks that help them navigate daily life with DM1. Attendees will hear inspiring stories of resilience and learn creative solutions for managing symptoms, staying positive, and improving quality of life.

DM Type 2

This track was designed for individuals and families living with myotonic dystrophy type 2 (DM2).

DM2 Essentials: Understanding, Managing, and Thriving with Myotonic Dystrophy Type 2
This session provides an essential understanding of Myotonic Dystrophy Type 2 (DM2), making it ideal for newly diagnosed individuals and those seeking to refresh their knowledge. Attendees will learn about the causes and genetics behind DM2, how the condition affects different systems of the body over time, and strategies for self-managing symptoms and building a strong clinical care team.
Mind Matters: Navigating Cognitive and Memory Challenges in DM2
This session delves into the cognitive challenges often faced by individuals with DM2, focusing on issues such as memory loss and executive function difficulties. Come to learn about the latest research on DM2’s cognitive impact and practical techniques to help manage these symptoms in daily life.
DM2 Stump the Doctor
In this open Q&A format, participants get the chance to ask a leading expert in DM2 their toughest questions. Can you stump the doctor?
Genetics Unveiled: Understanding Testing, Counseling and Family Conversations about DM2
This session explores the importance of genetic testing and counseling for individuals and families affected by DM2. Attendees will learn about the testing process, the role of genetic counselors, the importance of testing for registries and natural history studies, and planning for future generations.
Finding Relief: Exploring Medications and Tools for Managing Pain in DM2
This session addresses pain commonly experienced by people with DM2. Attendees will learn about both pharmacological and non-pharmacological pain management options, with a focus on physical therapy, occupational therapy, and lifestyle modifications, as well as pain relief medications.
DM2 Community Panel: Stories of Hope and Helpful Tips
In this panel session, individuals from the DM2 community will share their journeys, offering practical tips and life hacks for managing daily life with DM2. Attendees will gain insight into how others have overcome obstacles, discovered solutions for symptom management, and maintained a positive outlook.

Caregivers

This track was designed for family members, caregivers, those who are their own caregiver; anyone living with any type of DM.

Building Resilience: Family Dynamics and Support in the DM Journey
This session examines how Myotonic Dystrophy affects family relationships, focusing on the emotional and logistical challenges caregivers face. Attendees will learn strategies for maintaining healthy family dynamics, fostering open communication, and providing effective support to loved ones living with DM.
Love in Transition: Balancing Romantic Connections and Caregiving in DM
This session explores how DM can affect romantic partnerships, offering practical advice for maintaining healthy relationships. The discussion will cover adjusting to changes in parternships, communication strategies, and how to navigate the unique challenges that DM presents within a partnership. This session is for unaffected caregivers only.
Unaffected Male Caregivers Community Panel
Join an inspiring panel of unaffected male caregivers as they share hard-earned wisdom on prioritizing their own well-being while caring for loved ones. Discover practical, actionable self-care tips and learn how to give yourself permission to “put your oxygen mask on first” in this empowering discussion about balancing caregiving with self-care.
Unaffected Female Caregivers Community Panel
Join an inspiring panel of unaffected female caregivers as they share hard-earned wisdom on prioritizing their own well-being while caring for loved ones. Discover practical, actionable self-care tips and learn how to give yourself permission to “put your oxygen mask on first” in this empowering discussion about balancing caregiving with self-care.

Congenital Myotonic Dystrophy (CDM)

This track is specifically designed for families or parents of children with Congenital DM.

Adulthood Ahead: Essential Planning for Parents of Children with CDM
This session provides essential guidance for parents of children with Congenital DM as they prepare for their child’s transition to adulthood. Topics include the legal, medical, and financial considerations in the United States to address before turning 18, as well as tips for building a strong support system to ensure a smooth transition.
Empowering Adult Children: Managing Care, Service Delivery, and Living with CDM
This session focuses on supporting an adult child with Congenital DM, offering strategies for promoting independence, navigating medical care, and exploring work and living options in the United States. Parents will leave with practical advice on how to best support their adult children as they grow and adapt.
CDM Community Panel: Sharing Everyday Victories Through Useful Tips, Tricks, and Assistive Services
This community panel session provides attendees an opportunity to connect with other CDM families and learn valuable insights on supporting your CDM child. Panelists will provide practical tips for navigating everyday challenges like mobility and communication while also discussing assistive services and programs that have worked well for them.

Community Track

This track is specifically designed for all members of the myotonic dystrophy community.

Your Guide to Clinical Trials: From Phases to Participation
This session provides an overview of the clinical trial process, helping attendees understand what to expect and how to prepare. It covers the different phases of trials, participant experiences, and key do’s and don’ts. Attendees will leave with the knowledge needed to make informed decisions about trial participation.
Managing Dietary Needs and Swallowing with DM
In this session, experts discuss how DM1 & DM2 impacts nutrition and swallowing. Attendees will learn about the latest research on these issues and gain practical advice on managing symptoms through dietary planning and adaptive tools that can improve quality of life.
Securing Tomorrow: Financial Strategies and Planning for You and Your Family’s Future
This session addresses the financial challenges and future planning needs of individuals with DM1 & DM2 and their families. Topics include healthcare costs, creating a will, and strategies for reducing financial stress while planning for long-term care and legacy planning.
Living Better with DM: Tools and Services of Occupational Therapy and Home Health
This session highlights how occupational therapy (OT) and home health services can improve the daily lives of those living with DM1 or DM2. Experts will discuss common mobility and self-care challenges and offer practical solutions through adaptive equipment and environmental modifications.
Digesting the Facts: Managing GI Complications in DM1 and DM2
This session focuses on gastrointestinal (GI) complications often seen in DM1 & DM2. Experts will cover how DM affects the GI system and common misdiagnoses, share the latest research, and provide actionable tips for managing symptoms.

JOA and Life Works Tracks

This track is specifically designed for adult community members living with Juvenile-onset myotonic dystrophy community.

The JOA Lounge
The Westin features a “Rec Room” that will serve as the JOA Lounge for the duration of the conference. With couches and bean bags, tabletop games, air hockey, pool, and an arcade style video game, the JOA Lounge is sure to be a good time!
Let’s Get Moving!
This session provides interactive exercises as well as practical advice on incorporating exercise into the daily routine of individuals with Juvenile-Onset DM (JOA).
Building Connections: Gaining Confidence in Social Situations
Join this session for a facilitated conversation focused around enhancing social skills for JOA’s. Learn strategies for navigating social environments with confidence.
JOA Stump the Doctor
In this open Q&A format, participants get the chance to ask a leading expert in DM1 their toughest questions. Can you stump the doctor?
Landing the Job: Building Resumes and Acing Interviews
This session provides practical guidance on navigating the job search process, from creating a compelling resume to mastering interview techniques. Attendees will learn how to find a job that's the right fit for them and craft a resume that highlights their skills and experiences, even if they have limited job history. Experts will also share tips on how to prepare for interviews, including how to answer common questions, communicate both skills and accessibility needs effectively, and make a positive impression.
Thriving Under Pressure: Managing Mental Health in Everyday Life
In this session, young adults will explore the importance of mental health and learn strategies to manage stress, anxiety, and other challenges that may arise during transitions and navigating day to day life.

Wellness Room

This track is specifically designed for community members to engage in movement.

Chair and Stand-Up Zumba
Get moving with this fun, energetic Zumba session designed for all mobility levels.
Chair and Gentle Yoga
A gentle yoga session tailored to individuals with DM. Practice breathing techniques, stretching, and relaxation from the comfort of a chair.
Movements for Everyday Life
This interactive session will provide attendees easy, practical movements to incorporate into daily routines for better mobility and health.

Fireside Chats

You've Just Been Diagnosed, What's Next?
An intimate discussion on what to expect after a diagnosis of DM. Learn about resources, medical care, and building a support network.
Affected Men’s Real Talk: Managing Intimacy and Sexual Health Challenges with DM
A candid conversation about how DM affects men’s sexual health and intimacy. Gain tools for managing these changes and maintaining healthy relationships.
Affected Women’s Real Talk: Managing Intimacy and Sexual Health Challenges with DM
A discussion on the unique challenges women with DM face in their sexual and reproductive health, with practical advice and resources.
There’s Hope: A Discussion About the Future of DM2 Research
Join us for an inspirating discussion on DM2 research. Hear from a leading research in the DM2 space about ongoing research and the future implications on DM2.
Voices for DM: Open Discussion on Advocacy
This session focuses on empowering DM community members to become advocates for better care and research funding. Learn how to advocate for yourself and your loved ones and get involved in DM advocacy at the local and national levels.

Sunday Morning Workshops

Don't miss your chance to take part in our Sunday Morning Workshops! From 9:00 AM to 12:00 PM, Community Attendees may book one-on-one meetings with experts in various fields relevant to myotonic dystrophy.

Please note: Workshop space is limited. Indicating your interest during Registration does not guarantee you an appointment. Additional instructions to book an appointment will be sent to interested registrants. All appointments will be booked on a first come, first served basis.

Caregiver Workshop: Legacy Planning
This workshop is designed to support those caring for individuals with myotonic dystrophy, offering practical advice and resources.
Genetic Testing and Counseling
Experts will help you understand genetic testing options, reproductive choices, and strategies for managing hereditary aspects of myotonic dystrophy.
Family Planning
This workshop provides personalized guidance on genetic considerations and family planning in the context of myotonic dystrophy.
Insurance, Social Security, and Medicare
Experts will be available to discuss navigating healthcare systems, managing medical expenses, and accessing necessary treatments. This workshop aims to empower community members with the resources and support needed to handle financial and logistical challenges within the health and insurance systems.
Accessible and Adaptive Devices
Focused on enhancing daily living and mobility, this workshop offers individualized advice on effective therapy techniques. Professionals will share exercises, adaptive strategies, and equipment recommendations to improve physical function and quality of life for those with myotonic dystrophy.