MDA Engage Social Gathering Spotlight

Throughout the fall and winter months, MDA Engage Social Gatherings will be taking place throughout the country. These gatherings facilitate community through establishing opportunities for families, clinicians, researchers, volunteers, sponsors, supporters, and MDA staff to connect in a casual social setting. Participants tell their stories and are united within the neuromuscular community, supporting each other and sharing experiences. Be sure to like your local Facebook page to be kept up to date on gatherings in your area.

Event spotlight: Washington, DC

On Tuesday, Oct. 15, more than 90 participants gathered at the Grand Hyatt Hotel in Washington, DC, to participate in MDA’s first MDA Engage National Social Gathering. The event was focused on the MDA community coming together in a social setting with time for programming on employment for people with neuromuscular diseases.

Participants were greeted by Lynn O’Connor Vos, MDA’s president and CEO. Lynn shared the work MDA is doing across the organization and how the organization is paving a new path forward in terms of understanding neuromuscular disease and enabling life-changing innovations in research, treatment, and care. Following Lynn, a thoughtful panel discussion on employment and neuromuscular disease was moderated by Chris Rosa, PhD, MDA board member and assistant vice chancellor for Student Inclusion Initiatives at the City University of New York. Panelists discussed topics such as their career journey, accommodation needs, and public policy issues related to employment. The event concluded with a fireside chat with Michael Gamel-McCormick, disability policy director for the US Senate Specialist Committee on Aging (reporting to Sen. Bob Casey, ranking member). Michael spoke about the work happening on Capitol Hill regarding disability employment and some key objectives in this area that Sen. Casey’s office is working toward.

MDA would like to thank our elite and premier national partners who were in attendance at the event: International Association of Fire Fighters (IAFF), National Association of Letter Carriers (NALC), and Biogen. MDA would also like to thank MDA Engage National Social Gathering supporters: Strongbridge Biopharma, Biogen, and Stealth Biotherapeutics.