Who We Are

The Hereditary Disease Foundation, based in New York City, is a California non-profit tax-exempt organization under Section 501(c)(3) of the Internal Revenue Code. The programmatic work of the HDF is guided by our Board of Directors and the Scientific Advisory Board and developed and managed by the Leadership Team.


Board of Directors

Robi Blumenstein

Bruce Donaldson

Sandy Fox

Berta A. Gehry

Frank O. Gehry

David Gerstenhaber

Kelly Posner Gerstenhaber, Ph.D.

Arthur Golding, M.D.

Jonathan Guest

David Housman, Ph.D.

Joan Leiman

Karen Newman

Herbert Pardes, M.D.

Alice Wexler, Ph.D.

Nancy S. Wexler, Ph.D.

Anne B. Young, M.D., Ph.D., Vice Chairman of the Board

David Zwally, Chairman of the Board


Board Committees

Finance Committee

Bruce Donaldson

David Gerstenhaber

Jonathan Guest

Herbert Pardes, Chair

 

Audit Committee

Bruce Donaldson, Chair

David Gerstenhaber

Karen Newman

 

 

Nominating and Governance Committee

Kelly Posner Gerstenhaber, Chair

Joan Leiman

David Zwally

 

 

Scientific Advisory Board Liaison Committee

Kelly Posner Gerstenhaber

Jonathan Guest

David Housman, Chair

David Zwally

 

Leadership Team

Jonathan Guest, Chief Executive Officer and Vice President, Legal Affairs

Nancy Wexler, Ph.D., President

Travis Carey, Chief Financial Officer

Alice Wexler, Ph.D., Secretary

Julie Porter, Director of Administration

Kenneth Martin, Operations Manager


Lifetime Directors*

Julie Andrews

Gerald Aronson, M.D.

Elaine Attias

James Blanchard

Deborah Blethen

Betty Borman

Carol Burnett

Jean Hale Coleman

Jodie Evans

Marjorie Fasman

Dewanna Golding

Kiyo Higashi

Robert Higashi, CPA

Jonathan Matz

Elaine May

Shelby Modell

John Moorhouse

Virginia Moorhouse

Edward C. Moses

Joyce Ostin

Michael Ostin

Morris Ostin

Steven Perez

Vincente Perez

Patricia Phelps, Ph.D.

Marisa Pouw

Alison Rubinson

Joel Rubinson

Mary Carol Rudin

Susan Rudin

David Shea

Jennifer Shea

Susan I. Spivak

Billie Milam Weisman

Luanne Wells

*Lifetime Directors are honorary Directors without any role in governance


Jonathan Guest, Chief Executive Officer and Vice President, Legal Affairs

Before joining the leadership team of the Hereditary Disease Foundation, Jonathan was a corporate and securities law partner in McCarter & English LLP and Greenberg Traurig LLP. He brings to HDF his experience advising drug development companies, public and private, as well as non-profits, on corporate governance matters and finance. Jonathan is also adjunct professor at Boston University School of Law in the Transactional Law Program. He received a B.A. from Wesleyan University, J.D. from Cornell Law School, and LL.M. (taxation) from Boston University School of Law, and before law school two graduate degrees in religious studies from Harvard. 


Nancy S. Wexler, Ph.D., President

Involved in public policy, individual counseling, genetic research, and federal health administration, Nancy is most widely known for her important scientific contribution on Huntington’s disease.

Nancy currently holds or has held numerous public policy positions, including Chair of the Joint NIH/DOE Ethical, Legal and Social Issues Working Group of the National Center for Human Genome Research and the Department of Energy, Chair of the Human Genome Organization (HUGO), giving guidance during the Human Genome Project. She has served as a member of the board of directors of the American Association for the Advancement of Science on the Advisory Committee on Research on Women’s Health, National Institutes of Health and as a Councilor, Society for Neuroscience. She is a Council Member of the Institute of Medicine, National Academy of Sciences. As their representative, she serves as a member of the Committee on Science, Engineering, and Public Policy (COSEPUP), National Academy of Sciences, National Academy of Engineering, and the Institute of Medicine.

Nancy is a Member of the American Academy of Arts and Sciences; a Member of the Institute of Medicine, National Academy of Sciences; a Fellow at the Royal College of Physicians, London, UK; a Fellow of the American Association for the Advancement of Science, Section on Neuroscience; and a Member of the European Academy of Sciences and Arts.

Nancy has received numerous honors and awards, including several honorary doctorates. She received the Albert Lasker Public Service Award in 2003, the Benjamin Franklin Medal in Life Science 2007 and the Hermann J. Muller Award for Contributions to our Understanding of Genes and Society in 2016.

In 2005, a biography entitled “Gene Hunter” was written about Nancy as part of a 10-volume Women’s Adventures in Science series, co-published by National Academies Press and Scholastic Library Publishing. It is intended for junior high school kids – particularly to inspire young girls to go into the fields of math and science. There is also a website (www.iwaswondering.org) to accompany the book.

Nancy received an A.B. cum laude from Radcliffe in 1967 and a Ph.D. in clinical psychology from the University of Michigan in 1974.


Travis J. Carey, Chief Financial Officer

Travis has over 15 years combined experience as a consultant, employee, board member, auditor, and volunteer serving the not-for-profit industry. He has provided accounting services for foundations, schools, human rights organizations, religious organizations, associations and other tax-exempt organizations. Travis was previously Vice President of Finance and Operations at Rockefeller Philanthropy Advisors where his responsibilities included reporting to the Board of Directors, reviewing grantee financial statements, monitoring internal controls, supervision of the annual audit, tracking restricted funds, legal compliance, investment performance monitoring, management reporting and operational oversight.

Mr. Carey holds a BS-Accounting from the State University of New York at Plattsburgh, and is a CPA licensed to practice in New York. He has taught Advanced Accounting for Not-for-Profits at NYU School of Continuing Professional Education. He is also member and past Chairman of the NYSSCPA Tax Exempt Organizations Committee and a member of the NYSSCPA Not-for-Profit Organizations Committee.


Julie Porter, Director of Administration

Julie oversees the staff administration of the Hereditary Disease Foundation. She also plays a key role in fundraising, advocacy, event and Workshop coordination. Julie also plays a unique role in the oversight of the Venezuelan Huntington’s disease research project data supported by the Hereditary Disease Foundation. She has been with the HDF since 1996.


Kenneth Martin, Operations Manager

Kenneth manages the day-to-day operations of the Foundation’s finance office. He also assists in facility operations and with workshops and special events. He has more than 20 years of non-profit management experience.