MDA Engage Symposiums are Back in Full Swing

MDA Engage Symposiums returned in 2023 offering the neuromuscular disease community an opportunity to connect with one another in person and learn directly from expert clinicians about topics related to their diagnosis and daily living. Over 200 people attended the reestablished Engage Symposiums held in Stanford, CA, Princeton, NJ, and Minneapolis, MN last year. Each Symposium provided general daily living sessions for anyone living with a neuromuscular disease, in addition to sessions focused specifically on three to five diseases, sharing information pertinent to the treatment landscape, disease management, and current research for each. Between the three symposiums, 57 clinicians from 11 different MDA Care Centers shared their knowledge and answered attendees’ questions. Attendees also had the opportunity to browse the resource hall to meet with other organizations and businesses that offer support services to the community.

“Thank you for putting together such an interesting and informative day.  It gives me motivation to look into additional ways to help myself and make living with this disorder more tolerable,” shared one attendee on the anonymous, post-event survey.

“A wonderful event that greatly exceeded my expectations,” another attendee stated on the survey. “It provided both breadth (a broad discussion of NMD) and depth (breakout sessions and specific sub-diseases). Thank you for organizing this valuable event.”

When attendees were asked in a post-program survey to share their top takeaway from attending the symposium, many people responded with words such as “hope” and “connection”. “These symposiums offer a unique environment for connection,” shares Marissa Lozano, Director of Community Education at MDA. “Connection with others who are living with the same or similar diagnosis, connection with clinicians caring for this community, and connection with industry and local organizations offering support and resources. So many wonderful ideas are shared, giving the community hope and confirmation that they are not alone. People leave feeling empowered.”

Building off the momentum from 2023, MDA will host four Engage Symposiums this fall. Dates and locations include:

• October 5, 2024, in Atlanta, GA
• November 2, 2024, in Stanford, CA
• November 9, 2024, in both Irvine, CA and Dallas, TX

Each symposium will be chaired/co-chaired by clinicians at local MDA Care Centers including Emory University, Children’s Healthcare of Atlanta, University of California Irvine, Stanford University, University of Texas Southwestern and several others. Topics vary by location but will include both diagnosis-specific sessions and daily living sessions such as exercise, nutrition, and mental wellness. In addition to hearing presentations from clinicians, attendees will hear from fellow members of the neuromuscular community about their personal experiences, emphasizing the value of connecting with others through shared experiences.

MDA Engage Symposiums are free for the NMD community to attend. To learn more or to register, please visit mda.org/care/community-ed/engage-symposiums. If the cost to travel is a barrier to attending, MDA has a limited number of travel stipends available to help. Please email us at mdaengage@mdausa.org to learn more.

Thank you to our MDA Engage supporters: Biogen, Mitsubishi Tanabe Pharma America, and Sarepta Therapeutics