National Tay-Sachs & Allied Diseases Association

Leadership

National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

NTSAD Staff Profiles

Kathleen M. Flynn

Chief Executive
Officer

Diana Jussila

(formerly Pangonis)
Director of Family Services

Valerie Greger, PhD

Director of Research

Becky Benson

Family Support and Engagement
Manager

Cynthia Perreault-Micale, PhD

Research Manager

Erin Demers

Development Manager

Angela Papierski

Development Assistant

Board of Directors

Officers

President

Sara Scaparotti

Vice President

Jon Lawrence, Esq.

Treasurer

Michael Richards

Secretary

Lisajane Romer

Past President

Oralea Marquardt, LCSW

Directors

Lauren
Celano

Bonnie
Davis

Serene
Forte, PhD, MPH

Amber
Franzen

Matthew Goldstein, MD, PhD

Dawn
Jacob Laney, MS, CGC, CCRC

Staci
Kallish

Why I joined the Board

Martha
Kleinman

Pat
O’Malley, MD

Colleen
Pierce

Susan Rodon

Susan
Roden

Deborah
Sanders, JD

Stefanie
Solomon, Esq.

Why I joined the Board

David
Zanella

Scientific Advisory Council

The role of the Scientific Advisory Council (SAC) is to ensure that NTSAD’s research strategy and investments align with NTSAD’s mission to find effective treatments for Tay-Sachs, Canavan, GM1, and Sandhoff diseases and to serve as a resource for the NTSAD Community. SAC members contribute their respective expertise to provide updates and context to new research developments and provide professional guidance to NTSAD. Members examine the progress, suggest new initiatives, and leverage their professional networks to recruit additional individuals to provide expertise to support initiatives. In addition, SAC members participate in NTSAD’s Research Initiative grant program by reviewing and evaluating applications.

Members of the Council are as follows:

Heather Gray-Edwards, DVM, PhD, Chair
Dominic Gessler, MD, PhD, Co-chair

  • Allison Bradbury, PhD
  • Florian Eichler, MD
  • Rafael Escandon, DrPH, PhD, MPH
  • Amanda Gross, PhD
  • Edwin Kolodny, MD *
  • Steven Kushner, MD, PhD
  • Gustavo Maegawa, MD, PhD
  • Doug Martin, PhD
  • Amanda Nagy, MD
  • David Pleasure, MD
  • Miguel Sena-Esteves, PhD
  • Christopher Stephen, MD
  • Mathias Schmidt, PhD
  • Evan Snyder, MD, PhD
  • Cynthia Tifft, MD, PhD, FACMG
  • Steven Walkley, DVM, PhD

*Emeritus

Corporate Advisory Council

The purpose of the Corporate Advisory Council (CAC) is to assist NTSAD leadership in navigating the dynamic biotechnology and biopharmaceutical industries while devising a strategy for advancing research aimed at developing effective treatments for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. The CAC informs NTSAD about relevant scientific, regulatory, and commercial developments; advises on biotech investment interest in the clinical trial space; and acts as a conduit to building relationships with industry partners.

Members of the Council are as follows:

  • Ritu Baral
  • Bradley L. Campbell
  • Laura Cohen
  • Michael Gladstone
  • John Gordon
  • Joan Keutzer
  • Walt Kowtoniuk
  • Greg Licholai

Past NTSAD Board Presidents

  • Oralea Marquardt, LCSW
  • Staci Kallish, DO
  • Blyth Lord
  • Brian Manning
  • Shari Ungerleider
  • Kevin Romer
  • Thomas P. Lord
  • Bradley L. Campbell
  • John F. Crowley, JD
  • Mark P. Madsen
  • Daniel N. Turner, Esq.
  • Meredith R. Margolis, PhD
  • Yvonne Sacks
  • Daniel Greenberg, Esq.
  • Sedra Schiffman
  • Steven Laver, Esq.*
  • Jayne Mackta
  • Judith Saperstein
  • Claire Kahn*
  • Evelyn Sussman*
  • Ruth Dunkell*

* deceased