Nominations Open for Muscular Dystrophy Coordinating Committee

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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meetingNominations for individuals who wish to serve as non-federal public members on the Muscular Dystrophy Coordinating Committee (MDCC) are currently open and being accepted by the office of the Secretary of the Department of Health and Human Services (HHS) until February 27. The MDCC is a federal advisory commission that was created through the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 with the purpose of accelerating research for muscular dystrophy and easing the burdens caused by the disease.

Candidates must be willing to help in the committee’s mission to advance research related to the disease, as well as encourage MD-related patient and family communities. The members will be chosen from all of the applications received and will serve three-year appointments, which can be renewed an unlimited number of times.

The department of HHS will accept self-nominations and the eligible criteria include leaders or representatives of major muscular dystrophy research, advocacy, and service organizations, parents or guardians of muscular dystrophy patients, patients themselves, service providers, educators, scientists, as well as others holding either professional or personal experience regarding the disease. On the other hand, nominations from federally-registered lobbyists may not be accepted, according to the White House Office of Management and Budget requirements.

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The committee is designed to feature a broad spectrum of different members, in order to create a balanced group representative of the muscular dystrophy community’s own diversity. The committee is composed of both members of the Coordinating Committee representing government agencies, as well as public members “including a broad cross section of persons affected with muscular dystrophies including parents or legal guardians, affected individuals, researchers, and clinicians,” as stated in the committee’s authorizing statute.

In order to assure the diversity of the committee, the HHS Federal advisory committees privilege representation from the point of view of women, all ethnic and racial groups, people with disabilities, as well as representation with geographic diversity. While the MDCC get together at least two times a year, members are expected to participate in the activities of the committee, either personally or via remote access.

Submissions must be sent by e-mail to Glen Nuckolls, Ph.D. ([email protected]), with contact information, curriculum vitae or resume and a paragraph with information on the nominee’s qualifications and experience with muscular dystrophy and patients communities. More information is provided on the MDCC’s website here.