May 2nd, 3rd & 4th
The Westin Indianapolis Hotel
Indianapolis, Indiana

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!

Kicking the event off on Thursday, May 1st, MDF will host an early arrivals evening reception at The Westin Indianapolis. Our conference sessions will run from Friday May 2nd through Saturday May 3rd, with optional activities and workshops on Sunday morning, May 4th.

Register as Community Member now to join us in Indianapolis, IN for our most anticipated event of the year!

New in 2025 - Sunday Morning Workshops

For the first time, MDF is excited to introduce special Sunday Morning Workshops for families living with myotonic dystrophy! This new program aims to provide personalized, one-on-one meetings with professionals with expertise in variety of DM related fields, including: occupational and physical therapy; genetic counseling and family planning; accessible and adaptive devices; caregiver resources; and case workers from The Patient Advocate Foundation. Read more about our Sunday Morning Workshops in the Program section below!

If you’d like to participate our Sunday Morning Workshops, be sure to indicate your interest upon registering!

Community Registration

Community conference registration is for individuals living with DM, their caregivers, friends, family, or loved ones. A Community registration includes access to general sessions, community sessions, meals, and other activities. Community registrants have the option to attend Professional Track sessions, however priority will be given to Professional registrants.

Looking for Professional Registration? Professional conference registration is for clinicians, healthcare providers, researchers, drug developers, and students focused on myotonic dystrophy. Click here to register as a DM Professional! >>>

Please note: Your conference registration does NOT include your hotel room! Find details about MDF's discounted room rate in the Hotel & Room Block section below!

Unable to attend in-person? Join us virtually! Please note that not all sessions will be recorded or made available to virtual attendees. Updates on virtual and recorded sessions coming soon!

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

Early Bird Registration ends December 2nd - $175
Regular Registration ends March 28th - $225
Late Registration accepted until April 11th - $275
Children (Ages 6 to 17) - $50
Children (Under 5) - Free
Virtual Registration - $50

Register Early for a Chance to Win!

The first 100 community registrants will be entered to win an Indy Racing Experience! The winner will receive a gift certificate to enjoy two laps around the legendary Indianapolis Motor Speedway.

Please note: the racetrack will be closed in preparation for the Indy 500 during the conference weekend, so the certificate must be used at a later date. The certificate does not expire and is valid until use.

Dining & Dietary Needs

During Conference Registration, you will be asked about your plans to attend certain receptions and meals to help MDF and The Westin Indianapolis tailor meals to your dietary requirements and anticipate how much food to prepare. All in-person registrations include the following meals:

Thursday Evening Welcome Reception for Early Arrivals (Hors d’oeuvres & Beverages).
Friday Breakfast, Networking Lunch, and Dinner & Entertainment.
Saturday Breakfast, Lunch, and Closing Dinner & Dance Party.
Sunday breakfast and snacks & coffee (Workshop participants only).
Some break time snacks & coffee/tea are also included throughout the event.

Financial Assistance

Community members are invited to request financial support to attend the conference in Indianapolis.

MDF Financial Assistance: Individuals living with DM and their caregivers can apply for financial aid to help cover the costs of of attending the 2025 MDF Conference in person! Click here to learn more and apply for MDF Financial Assistance to our 2025 Conference! >>>

Program

Education & Networking Sessions (Subject to Change)

Our program includes general, educational, mental health and wellness sessions, meals, and other activities. Click here to view full our full listing of Community Sessions at the 2025 MDF Conference! >>>

General sessions are held in the main ballroom and are for all attendees:

Welcome & State of the Foundation.
Industry Updates (Presented in partnership with EuroDyMA).
Stories of Inspiration from the DM Community
First Timers' Tea

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.
- Understanding DM1: From Genetics to Care & Everything in Between
- Breathe Easy, Sleep Sound: Managing Sleep & Pulmonary Health with DM1
- Keeping Your Heart in Check: DM1's Impact & Care Tips
- DM1 Stump the Doctor
- Genetics Unveiled: Testing, Understanding Results, and Family Planning with DM1
- DM1 Community Panel: Sharing Hope & Life Hacks
DM2 – for individuals & families living with Myotonic Dystrophy Type 2.
- DM2 Essentials: Understanding, Managing & Thriving with DM2
- Mind Matter: Navigating Cognitive & Memory Challenges in DM2
- DM2 Stump the Doctor
- Genetics Unveiled: Understanding Testing, Counseling & Family Conversations about DM2
- Finding Relief: Exploring Medication & Tools for Managing Pain in DM2
- DM2 Community Panel: Stories of Hope & Helpful Tips
CDM Families - for parents, guardians, and caregivers of anyone living with Congenital Myotonic Dystrophy Type 1 (CDM).
- Adulthood Ahead: Essential Planning for Parents of Children with CDM
- Empowering Adult Children: Managing Care, Service Delivery & Living with CDM
- CDM Community Panel: Sharing Everyday Victories through Useful Tips, Tricks & Assistive Services
Caregivers - for caregivers and anyone living with any type of DM.
- Building Resilience: Family Dynamics & Support in the DM Journey
- Love in Transition: Balancing Romantic Connections & Caregiving in DM
- Unaffected Male Caregivers Community Panel
- Unaffected Female Caregivers Community Panel
JOA & Life Works – for Juvenile-onset Adults (JOAs) only. Parents and family members are invited to attend other sessions.
- JOAs Let's Get Moving
- Building Connections: Gaining Confidence in Social Situations
- JOA Stump the Doctor
- Landing the Job: Building Resumes & Acing Interviews
- Thriving Under Pressure: Managing Mental Health in Everyday Life
Professionals – for clinicians, researchers, industry, and other DM professionals.
- Click here to learn more about Professional Registration for the 2025 MDF Conference!

Additional sessions and activities for all community members include:

Community Sessions – for all members of the DM community.
- Your Guide to Clinical Trials: From Phases to Participation
- Managing Dietary Needs & Swallowing with DM
- Securing Tomorrow: Financial Strategies & Planning for You and Your Family's Future
- Living Better with DM: Tools & Services of Occupational Therapy and Home Health
- Digesting the Facts: Managing GI Complications in DM1 & DM2
The Wellness Room – for those who want to explore wellness options.
- Chair & Stand-Up Zumba
- Chair & Gentle Yoga
- Movements for Everyday Life
Fireside Chats – engage with experts in insightful small group discussions covering a wide range of topics.
- You've Just Been Diagnosed, What's Next?
- Affected Men's Real Talk: Managing Intimacy & Sexual Health Challenges in DM
- Affected Women's Real Talk: Managing Intimacy & Sexual Health Challenges in DM
- There's Hope: A Discussion About the Future of DM2 Research
- Voices for DM: Open Discussion on Advocacy

Learn more about our Community Sessions! Click here to find the full listing of all our Community Sessions and their detailed descriptions. >>>

Evening Entertainment

Get excited for our Friday night entertainment, where you're the detective! Channel your inner Sherlock Holmes and Agatha Christie because we’re hosting an interactive murder mystery dinner! Talk with different suspects throughout dinner and see if you can solve the case!

Don't forget your dancing shoes! As is tradition, Saturday night will feature a Dinner & Dance Party for you to show off your favorite new moves!

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:

Genetic 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.
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.
Insurance, Social Security & 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.
Caregiver Resources: This workshop is designed to support those caring for individuals with myotonic dystrophy, offering practical advice and resources. Experts will discuss strategies for managing caregiver stress, accessing support networks, and ensuring the well-being of both caregivers and their loved ones.

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.

First MDF Conference?

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.

Conference Networking Buddies

Be the bridge between the DM Community and Research Professionals! MDF's Conference Networking Buddies system pairs DM Professionals (researchers, clinicians, and/or industry partners) 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.

Juvenile-onset Adult (JOA) Program

Our Juvenile-onset Adults (JOA) community are in for a real treat at next year’s Conference! 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!

Myotonic Dystrophy Research Poster Showcase

Sharing the latest myotonic dystrophy research updates is a key feature of the MDF Conference! The DM Research Poster Showcase is an incredible opportunity for researchers and drug developers to explain and discuss their work with MDF conference attendees, including other researchers, clinicians, and families living with DM.

During Friday's professional networking session, leading researchers will critique and provide invaluable feedback to poster authors. Our Saturday Showcase offers an exclusive, unopposed time for attendees to explore posters and connect with their authors. Outstanding contributions by young investigators will be recognized with awards during the Professional Track.

Click here to learn more about Professional Registration for the 2025 MDF Conference!

Lodging, Transportation, and Childcare

About the Conference Hotel

We listened to feedback from past conferences and aimed to find a conference space that was accessible, easy to navigate, and comfortable. We spent months working to find the perfect location for the Conference – we firmly believe the DM community deserves the best! After research, in-person site visits, and community input, MDF ultimately decided to host the 2025 Conference at the Westin Indianapolis.

The hotel has several features that make it the perfect place for the Conference! It offers a variety accessible room options to ensure the diverse needs of our community are met. The conference space is easily accessed from any floor through the hotel’s singular set of elevators. The space also features a ballroom and breakout rooms all located within one floor of each other. MDF will have more rooms for sessions than ever before, providing space for research, quiet spaces, and other alternative programming.

Discounted Room Rate

MDF has secured a special discounted room rate for conference attendees at The Westin Indianapolis starting at $239 per night! Rooms are limited and not guaranteed until the hotel confirms the reservation. Rooms must be booked before April 1st, 2025!

Click here to book your stay with MDF's discounted rate! >>>

Need an accessible/ADA room for your Conference stay? Follow these simple steps to make sure all your room needs are met! >>>

Please note: Registering for the conference does NOT reserve your hotel room.

The Westin Indianapolis is located in the heart of the city, where you can enjoy a surprise around every turn! You’ll find entertainment, upscale restaurants, shopping, and all the necessities close by. Many of Indianapolis’ renowned attractions are just a few minutes away, including the world's largest children’s museum and White River State Park!

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

Transportation

For our out of town guests, The Indianapolis International Airport (IND) is assistant-device friendly and easy to navigate. In 2021, the airport was even awarded an Accessibility Award. The airport ensures comprehensive ADA accessibility, including wheelchair-assistance for departing and arriving passengers, visual paging monitors, and braille signage.

The Indianapolis International Airport (IND), approximately 13 miles from The Westin Indianapolis, the Conference Hotel.

Visitors have a variety of transportation options to reach The Westin Indianapolis, 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.

Click here for more detailed Lodging and Transportation information. >>>

Mobility Devices

MDF has secured exclusive discounts from two local mobility device rental companies for our conference attendees. Both companies offer convenient hotel drop-off and pick-up services for their devices. You can choose either provider to book your mobility rentals at a discounted rate.

Mobility Plus. Mobility Plus is offering a 10% discount. Use the code MDF2025 at checkout to receive the discounted rate.
Indy Scooter Rental. Indy Scooter Rental has created a direct booking link for discounted rentals.

Childcare

MDF is excited to offer on-site childcare for children under 12 though Corporate Kids Events! If you would utilize childcare at the Conference, please indicate your interest upon registering or contact planner@myotonic.org no later than Monday, March 31st, 2025.

Please note: Conference childcare has limited space and is offered on a first come, first serve basis.

Registration Cancellation Policy

Plans change - we get it! MDF contracts for conference presenters, travel, and hotel services nine to twelve months in advance, and adjusts those contracts based on registration numbers. We are therefore unable to process registration cancellations made after Friday, March 28, 2025.

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.

Questions?

If you have questions about the 2025 MDF Conference or need assistance with registration, please contact MDF at 415-800-7777 or by email at planner@myotonic.org.

Corporate Sponsorship

For questions on corporate sponsorship opportunities at the 2025 MDF Conference, please contact MDF at development@myotonic.org.

Community Registration - 2025 MDF Conference