Association for Glycogen Storage Disease

current members of the AGSD Board of Directors

President

Kim Burney

president@agsdus.org

term ends 12/31/24

Kim Burney is from Ann Arbor, MI and has life experiences with GSD Type IX.

Vice-President

Rebecca Lichucki

term ends 12/31/24

Rebecca Lichucki is from Illinois and has life experience with GSD Type Ib

Secretary

Irene Helley

term ends 12/31/24

Irene Helley is from California and has life experience with an untyped GSD.

Treasurer

Heather Edwards

term ends 12/31/24

treasurer@agsdus.org

Heather Edwards is from Denver Colorado and has life experience with GSD Type Ib

Brian Pawlik, Chairman of the Board

term ends 12/31/26

Brian Pawlik is from Detroit, Michigan and has experience with GSD IA. He has been on the board for over 10 years and proudly brands himself a consensus builder.

Jason Cash, Board Member

term ends 12/31/26

Jason is an accomplished finance professional with over 20 years of experience in pharmaceutical services. He is currently the CFO of Aptitude Health. Jason lives in the Charlotte, NC area with his wife Carlee and two daughters Jasalyn and Kenslee (who has GSD 1A).

Barbara Owens, Board Member

term ends 12/31/25

Barbra Owens is from Maine and has life experience with GSD Type XI.

Katie Ward, Board Member

term ends 12/31/25

Katie Ward lives in Savannah Ga with her husband Chad , daughter Margo and son Lucas who has GSD 1A

Dr. David Weinstein, Board Member

term ends 12/31/25

Dr. David Weinstein is a Glycogen Storage Disease Consultant and Patient Advocate. He is founder of Weinstein Rare Disease and Clinical Developmental Consulting and previously served as Senior Vice President, Clinical Development at Passage Bio and separately served as Director of GSD Programs at the University of Connecticut, the University of Florida, and Boston Children's Hospital where he provided care for over 700 Glycogen Storage Disease patients.

Dr. Priya Kishnani, Co-Chair of the Scientific Advisory Board

shares a vote on the AGSD Board of Directors and advises the BOD on scientific GSD issues.

Dr. Priya Kishnani is C.L. and Sue Chen Professor of Pediatrics and a Division Chief of Medical Genetics at Duke University Medical Center.

Dr. Bert Bacharach, Co-Chair of the Scientific Advisory Board

shares a vote on the AGSD Board of Directors and advises the BOD on scientific GSD issues.

Dr. Bert Bacharach is Vice Chief of Staff at the University of Missouri Hospitals and Clinics, Medical Director of Adolescent and Specialty Clinics, and Chief of Pediatric Endocrinology/Diabetes

AGSD GOVERNANCE

The AGSD is governed by a set of Bylaws and a Board of Directors and Officers. The Board is responsible for transacting the business of the corporation, establishing major administrative policies governing the affairs of the corporation, establishing committees and their guidelines, and reviewing the performance of any officer of the corporation. The Board of Directors shall review requests for funds from those seeking assistance and act upon such requests as they best serve the goals of the corporation.

The AGSD Board of Directors consists of five [5] members elected from the AGSD Active Membership, the four AGSD Officers, and the Chairman of the Scientific Advisory Board. Each Director and Officer serves a three-year term. The Board of Directors holds a meeting just prior to the start of the AGSD annual conference, and has at least three conference calls during the year.

The AGSD Officers carry out the daily operations of the Association. You may contact the AGSD by emailing info@agsdus.org.

Every year, the Association for Glycogen Storage Disease has its General Meeting for members at the annual conference. Active members are able to comment and vote on proposals brought to this meeting from the Board of Directors and from individuals. The annual election nominations are also presented at this meeting.

AGSD BYLAWS

Membership Approved AGSD Bylaws 01NOV2022.pdf

Contact

info@agsdus.org
1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702

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