When our community first came together with our Congressional champions in 1999 to carve a path forward for our Duchenne community, among the priorities we had was for all federal agencies that impacted our community to work together.

We wanted to raise awareness of Duchenne within each of these agencies. We wanted these agencies to regularly plan for – and report on – their activities as related to Duchenne. And we wanted these agencies to convene regularly, work together, and identify shared opportunities to improve care, access, and research pipelines. Thus was born the Muscular Dystrophy Coordinating Committee (MDCC).

The MDCC includes 15 members, the majority of which represent governmental agencies, including numerous institutes from the NIH, the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Department of Defense (DOD), the Department of Education, the Social Security Administration, the Health Resources Services Administration (HRSA), and more. But – in addition to the federal agency members – committee membership also includes several representatives from the patient advocacy community.

Brian Denger – Nearly a Decade of Service

For many years, our Duchenne community has been powerfully represented on the MDCC by PPMD’s appointed member, Brian Denger. Brian’s service on behalf of our community included active participation in all MDCC meetings, presentations annually to the MDCC, leadership within the development of the MDCC inter-agency MD Action Plan (published in 2015), and leadership of the MDCC access workgroup. Our community is indebted to Brian for his service and leadership.

While we are saddened that Brian’s terms have concluded (as required by federal guidelines), we are delighted that he will continue to be actively engaged in the activities of the MDCC on behalf of PPMD and the community.

PPMD’s next MDCC Representative

We are also thrilled to share that PPMD’s nomination of Ryan Fischer, PPMD’s Senior Vice President of Community Engagement – to be our new MDCC representative was recently approved by the Secretary of Health and Human Services.

Ryan’s service to our community has included: leading our grassroots outreach, developing our community resources, social science work (including numerous patient preference studies), patient-focused drug development, engagement with industry, working with families to navigate access, and much more. His knowledge of our community and passion for fighting on behalf of all with Duchenne and Becker will make him a powerful asset to our PPMD community and a tremendous resource for our federal agency partners as he takes his seat at the table of the MDCC.