MDA President Announces Five-Year Plan for Association

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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The Muscular Dystrophy Association’s president and CEO opened its 2015 Scientific Conference in Washington this week by underscoring the organization’s main focus to accelerate discoveries of Duchenne muscular dystrophy (DMD) treatments for the families they serve. Steven M. Derks stated in his keynote address that the MDA has an audacious five-year plan for achieving this goal.

During the opening speech, Derks explained the two commitments of the association, which includes supporting the scientific field, which is now entering a new generation of promising clinical and research advancements, as well as a major plan focused on helping families since “solutions for them can’t come quickly enough.”

“This conference underscores two foundational commitments our Board recently affirmed in our new Mission 2020 plan,” stated the president and CEO. “First, MDA wants to continue to be the research leader in the neuromuscular and motor neuron space and second, MDA believes it needs to be an even more impactful and effective convener, collaborator and knowledge broker than in the past.”

The plan defines the future actions of the MDA for the next five years regarding its basic and translational research program, as well as the capitalization of the association’s position to accelerate frontline findings. The first goal of the plan is to improve the investment in the research program from MDA, as well as refocus the research grant program in order to improve its outcomes.

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The association also aims to play a more active role by bringing requests for proposals (RFPs) to the marketplace for funding and collaboration possibilities. A third goal is to increase the number of partnerships with organizations, such as voluntary health groups, government agencies and drug developers, to co-fund more grants.

In addition, the plan also defines a revolution in family care, clinic support, clinical trial infrastructure and support programs. The last goal is focused on discovering new and significant manners of connecting with their supporters through the use of retooled plans and programs. “We want more answers (for families) faster, pretty simple. It’s why we wake up in the morning and it’s why we’re all here today,” continued Derks.

Focused on ending the burden of DMD, the MDA has recently made some alterations to their organization and included three new research leaders. The professor in Emory’s Department of Pharmacology and MDA grant recipient, Grace Pavlath, was elected senior vice president and scientific program director, while Amanda Haidet-Phillips from Johns Hopkins University and Laura Hagerty from GlaxoSmithKline were nominated scientific program officers.

In addition, the association named renowned lawyer and health advocate Kristin Stephenson as the organization’s vice president of policy and advocacy. Regarding the alterations to the MDA, Derks said that “bold new strategies need bold leadership. We need great researchers with great ideas — that is where you come in. We need great sponsors and donors, which we have and we’re working to bring more together with us. We need great scientific and clinical advisors…and we need a talented, externally facing and networked staff team.”

Throughout years of work, the MDA has supported over 250 research projects all over the world working on muscle conditions, and has 150 clinics associated with its national structure. The association recently initiated another season of the MDA Muscle Walk, one of the most important events to raise both funding and awareness. With 150 walks taking place throughout the U.S., the annual event gathers support of local community and helps thousands of people.