Team Titin is excited to share that we will be participating in two upcoming MDA Engage Community Education events in 2026: one in Hershey, Pennsylvania and one just outside Chicago, Illinois.
These free, in-person events hosted by the Muscular Dystrophy Association bring together people living with neuromuscular disease, caregivers, clinicians, advocates, nonprofit organizations, and industry partners for a full day of education, resources, and connection. These events are opportunities for families to learn from expert-led sessions, explore practical care topics, connect with others in the community, and visit exhibitor booths with helpful resources.
Team Titin is grateful for the opportunity to participate alongside MDA and other neuromuscular organizations. Partnerships like this help us extend our mission to serve people living with, caring for, and researching titin-related muscle and heart disorders. Our work is grounded in four pillars: Connection, Advocacy, Care, and Research – and MDA Engage reflects many of those same priorities.
Because there will not be a SciFam meeting in 2026, these MDA Engage events are an important opportunity for our community to connect in person with one another, with Team Titin, and with key neuromuscular stakeholders.
Whether you are living with a TTN-related condition, caring for someone with titinopathy, or simply looking to learn more about neuromuscular care and resources, we would be delighted to meet you in person.
Team Titin Will Be at These 2026 MDA Engage Events
Hershey, Pennsylvania
MDA Engage Community Seminar with Penn State Health Milton S. Hershey Medical Center
Date: Saturday, July 18, 2026
Time: Registration and breakfast, 8:30–9:30 a.m. ET; event, 9:30 a.m.–5:00 p.m. ET
Location: Hershey Lodge – Confection Hall, 325 University Drive, Hershey, PA 17033
Cost: Free for community attendees; registration is required. Register here.
The Hershey seminar includes a full agenda of educational sessions on emerging therapies, genetics, pulmonary care, mental health, physical therapy, occupational therapy, cardiology, nutrition, community connection, and treatment development. These topics connect closely with Team Titin’s mission pillars of Care and Research, while the in-person format creates an opportunity for Connection and Advocacy.
One session we expect will be especially meaningful for many in the titin community is “Cardiology Complications and Management in Neuromuscular Disease,” presented by Teresa Sue Wang, MD, University of Pennsylvania. Because TTN-related conditions can involve skeletal muscle, heart muscle, or both, cardiology education is an important part of whole-person care for many families.
For those who would like to stay overnight, MDA notes that a room block has been reserved at Hershey Lodge, with rooms to be booked by June 15, 2026 to receive the group discount. Please visit this link to reserve a room.
Group ID: 10446817
General attendee passcode: HERSHEYNEURO26
Chicago / Lombard, Illinois
MDA Engage: Chicago
Dates: Friday, September 25 – Saturday, September 26, 2026
Friday Welcome Reception: 5:00 – 7:00 p.m.
Saturday: Registration and breakfast, 8:00 – 9:00 a.m.; learning sessions, 9:00 a.m. – 4:45 p.m.
Location: Westin Chicago Lombard, 70 Yorktown Shopping Center, Lombard, IL 60148
Cost: Free for community attendees; registration is required. Sign up here.
The Chicago event begins with a Friday evening welcome reception, offering time to meet others in the neuromuscular community in a relaxed setting before Saturday’s learning sessions. MDA describes the symposium as an in-person gathering for individuals living with neuromuscular disease and the people who support them, with expert-led sessions covering disease-specific education, practical daily living insights, and opportunities to connect with exhibitors and community resources.
MDA also notes that a block of rooms has been reserved at the Westin Chicago Lombard, with a listed room rate of $159 per night and a reservation cut-off date of September 3, 2026. Travel stipends may be available if travel costs are a barrier, and interested attendees can contact MDA at mdaEngage@mdausa.org.
Learn more here.
Why These Events Matter to Team Titin
Titinopathies are rare and complex. Families may navigate skeletal muscle symptoms, heart-related concerns, respiratory issues, mobility needs, genetic testing questions, and the emotional challenges that come with a rare diagnosis. No single organization can meet every need alone.
That is why collaboration matters.
Team Titin is proud to work alongside larger neuromuscular organizations like MDA, whose community education programs, care center network, advocacy efforts, and research investments serve many people affected by neuromuscular disease. Our missions are closely aligned: helping families access reliable information, connect with support, and move toward better care and better treatments.
For Team Titin, participating in MDA Engage is a chance to:
- Connect face-to-face with titin-affected individuals and families
- Share resources about TTN-related muscle and heart disorders
- Raise awareness of titinopathy within the broader neuromuscular community
- Learn from expert clinicians, researchers, and partner organizations
- Help ensure that the needs and voices of the titin community are represented
We are especially grateful that nonprofit advocacy organizations have been invited to participate at no cost, making it possible for groups like Team Titin to share information directly with families and professionals.
Come Visit the Team Titin Table
If you are attending the Hershey or Chicago MDA Engage event, please stop by the Team Titin table. We would love to meet you, hear your story, answer questions when we can, and help connect you with resources.
These events are also a wonderful opportunity to meet other families, learn from experts, and feel part of a larger neuromuscular community. For rare disease families, those moments of connection can be powerful.
Please note that Team Titin currently plans to participate in the Hershey and Chicago/Lombard events only. MDA is also hosting 2026 Engage events in Dallas, Texas and Stanford, California, but Team Titin will not have a table at those locations.
We hope to see you in Hershey or Chicago!
Quick links:
Registration:
Register for the Hershey MDA Engage Community Seminar
Register for MDA Engage: Chicago
