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HHS - 13889 - Muscular Dystrophy Coordinating Committee - Statutory (Congress Created)

GENERAL INFORMATION

Committee Name	Muscular Dystrophy Coordinating Committee	Agency Name	Department of Health and Human Services
Fiscal Year	2025	Committee Number	13889
Original Establishment Date	12/18/2001	Committee Status	Chartered
Actual Termination Date		Committee URL	https://mdcc.nih.gov/
Actual Merged Date		Presidential Appointments*	No
New Committee This FY	No	Max Number of Members*	18
Terminated This FY	No	Designated Fed Officer Position Title*	Program Director, Extramural Research Program
Merged This FY		Designated Federal Officer Prefix
Current Charter Date	8/15/2024	Designated Federal Officer First Name*	Glen
Date Of Renewal Charter	8/15/2026	Designated Federal Officer Middle Name
Projected Termination Date		Designated Federal Officer Last Name*	Nuckolls
Exempt From Renewal*	No	Designated Federal Officer Suffix	PHD
Specific Termination Authority		Designated Federal Officer Phone*	(301) 496-5876
Establishment Authority*	Statutory (Congress Created)	Designated Federal Officer Fax*	(301) 402-1501
Specific Establishment Authority*	42 USC 283g, section 404E	Designated Federal Officer Email*	glen.nuckolls@mail.nih.gov
Effective Date Of Authority*	12/18/2001
Exempt From EO 13875 Discretionary Cmte	Not Applicable
Committee Type*	Continuing
Presidential*	No
Committee Function*	Scientific Technical Program Advisory Board

RECOMMENDATION/JUSTIFICATIONS

Agency Recommendation*	Continue
Legislation to Terminate Required	Not Applicable
Legislation Status	Not Applicable
How does cmte accomplish its purpose?*	The Muscular Dystrophy Coordinating Committee (MDCC) coordinates research activities across the National Institutes of Health, with other Federal health programs and voluntary health organizations, and activities relating to the various forms of muscular dystrophy, including Duchenne, myotonic, facioscapulohumeral, congenital, limb-girdle and other forms of muscular dystrophy. The Committee has developed a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes and other member organizations of the MDCC. The Committee will determine strategies for implementation of the plan, and will periodically review and revise the plan.
How is membership balanced?*	The Muscular Dystrophy Coordinating Committee consists of 18 members, including the Chair. Two-thirds of the members represent governmental agencies, including the directors or their designees of four of the national research institutes that support muscular dystrophy research, representatives of other Federal departments and agencies whose programs support research on the muscular dystrophies or provide services to people with these diseases including the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Food and Drug Administration, the Administration for Community Living, the Social Security Administration, the Centers for Medicare and Medicaid Services, the Department of Defense, and the Department of Education. One-third of the members are public members, including representatives from voluntary health organizations.
How frequent & relevant are cmte mtgs?*	As described in the MD CARE Act (P.L. 107-84), the Muscular Dystrophy Coordinating Committee meets at least twice each year. The committee met once during this reporting period, in November 2024. Meeting topics are selected with input from Committee members and are chosen for their relevance to the patient and research communities.
Why advice can't be obtained elsewhere?*	The Muscular Dystrophy Coordinating Committee is composed of both representatives of Governmental agencies and public members who have developed a plan for conducting and supporting research and education on muscular dystrophy. The formation of the Committee was mandated in the MD-CARE Act (P.L. 107-84). The Committee will periodically review and revise the plan and will discuss ways to further coordinate activities across the NIH, with other Federal health programs and voluntary health organizations relating to the muscular dystrophies. There are no other committees with the representation and experience of the MDCC.
Why close or partially close meetings?	N/A
Recommendation Remarks	This committee did not produce any public reports during the fiscal year. Members: Gustavo Dziewczapolski, Emily Freilich, Walter Koroshetz, Daniel Perez, Natalie Street, and Eric Wang were on administrative extensions during the reporting period. One member is no longer on the committee: Diana Bianchi represented the Eunice Kennedy Shriver National Institute of Child Health & Human Development as prescribed by the Charter. There are four vacancies, which explains the discrepancy in the Charter membership requirements.

PERFORMANCE MEASURES

Outcome Improvement To Health Or Safety*	Yes	Action Reorganize Priorities*	Yes
Outcome Trust In Government	Yes	Action Reallocate Resources	No
Outcome Major Policy Changes	No	Action Issued New Regulations	No
Outcome Advance In Scientific Research	Yes	Action Proposed Legislation	No
Outcome Effective Grant Making	No	Action Approved Grants Or Other Payments	No
Outcome Improved Service Delivery	No	Action Other	No
Outcome Increased Customer Satisfaction	No	Action Comment	NA
Outcome Implement Laws/Reg Requirements	Yes	Grants Review*	No
Outcome Other	No	Number Of Grants Reviewed	0
Outcome Comment	NA	Number Of Grants Recommended	0
Cost Savings*	None	Dollar Value Of Grants Recommended	$0.00
Cost Savings Comment	Basic and clinical research accomplishments, as supported by MDCC member organizations, often take many years to unfold into new diagnostic tests and new ways to treat and prevent diseases. Coordinated efforts by the committee allow for screening and prevention of overlapping support for research projects.	Grants Review Comment	NA
Number Of Recommendations*	2	Access Contact Designated Fed. Officer*	Yes
Number Of Recommendations Comment	The development of additional recommendations is in progress. During the November 2024 meeting of the MDCC, the committee discussed recommendations of draft priorities for renewal of the Action Plan for the Muscular Dystrophies (last renewed in 2015; available at mdcc.nih.gov). Four working groups of experts were organized that each included researchers, people with lived experience and representatives from patient advocacy groups. These working groups on 1) disease mechanisms, 2) preclinical translation, 3) clinical studies and standards of care, and 4) thriving with muscular dystrophy met periodically during the summer and fall to develop broad priorities for research and strategies to reduce obstacles to care and services for those living with muscular dystrophies. The Co-Chairs from these working groups presented their recommendations to the MDCC during the November meeting. We will seek additional input from the public on these draft recommendations and the MDCC will consider approving them to be included in the 2025 renewal of the committee’s Action Plan.	Access Agency Website	Yes
% of Recs Fully Implemented*	70.00%	Access Committee Website	Yes
% of Recs Fully Implemented Comment	The Action Plan describes various research objectives that will take decades or longer to complete. NIH is currently supporting, and will continue to support, research grants that address approximately 70% of the topics in the Action Plan. Approximately 30% of the Action Plan relates to topics that are beyond the mission of the NIH, but relevant to other federal agency and voluntary group members of the MDCC. Approximately 60% of the objectives of the Action Plan have been the primary topics of funded NIH grants. Overall, approximately 70% of the objectives of the Action Plan have been fully implemented by support from NIH, other funding organizations, other Federal agencies and patient advocacy organization members of MDCC as well as for-profit organizations not part of MDCC.	Access GSA FACA Website	Yes
% of Recs Partially Implemented*	30.00%	Access Publications	No
% of Recs Partially Implemented Comment	Funding opportunities are active at NIH and other public and private MDCC member organizations that can be used to support many of the objectives of the Action Plan that are not yet fully implemented. These objectives are considered partially implemented if funding is available or if research has begun but goals have not yet been achieved.	Access Other	No
Agency Feedback*	Yes	Access Comment	The MDCC website is located at: https://mdcc.nih.gov/. The website contains information about Committee membership, past and upcoming meetings, and contains a link to the Research and Education Plan for MD.
Agency Feedback Comment*	Information is provided to the public at each meeting. The public can view information related to the Committee through the committee's official website.	Narrative Description*	The formation of the Muscular Dystrophy Coordinating Committee (MDCC) was mandated by the MD-CARE Act (P.L. 107-84). The purpose of the MDCC is to coordinate research activities across the National Institutes of Health (NIH) and with other Federal health programs and activities relating to the various forms of muscular dystrophy, including Duchenne, myotonic, facioscapulohumeral, congenital, limb-girdle and other forms of muscular dystrophy. As required by law, the function of the MDCC is to develop a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes and periodically review and revise the plan. The MDCC has developed a research and education plan for the muscular dystrophies for NIH. This plan lays out research goals for advancing research and treatments for the muscular dystrophies. The MDCC also has developed an Action Plan that identified key activities to be undertaken by the broader muscular dystrophy community (governmental organizations, advocacy groups, and academic and corporate investigators). This Action Plan is used as a means to identify and coordinate key activities.

COSTS

1. Payments to Non-Federal Members*	$800.00	1. Est Paymnts to Non-Fed Membrs Nxt FY*	$1,600.00
2. Payments to Federal Members*	$9,564.00	2. Est. Payments to Fed Members Next FY*	$117,700.00
3. Payments to Federal Staff*	$136,249.00	3. Estimated Payments to Federal Staff*	$173,740.00
4. Payments to Consultants*		4. Est. Payments to Consultants Next FY*
5. Travel Reimb. For Non-Federal Membrs*		5. Est Travel Reimb Non-Fed Membr nxtFY*
6. Travel Reimb. For Federal Members*		6. Est Travel Reimb For Fed Members*
7. Travel Reimb. For Federal Staff*		7. Est. Travel Reimb to Fed Staf Nxt FY*
8. Travel Reimb. For Consultants*		8. Est Travel Reimb to Consltnts Nxt FY*
10. Other Costs	$30,245.00	10. Est. Other Costs Next FY*	$21,693.00
11. Total Costs	$176,858.00	11. Est. Total Next FY*	$314,733.00
Date Cost Last Modified	9/25/2025 3:32 PM	Est. Fed Staff Support Next FY*
Federal Staff Support (FTE)*		Est Cost Remarks
Cost Remarks	Costs were lower in FY25, as the MDCC met one time. The Committee hopes to resume a regular schedule for FY26.

Interest Areas

Category Area Food and Drugs Food and Drugs Health Health Care Treatment

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