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 is currently hiring a Development and Communications Associate. Learn more and apply today!

NTSAD Staff Profiles

Kathleen M. Flynn

Chief Executive
Officer

Diana Jussila

(formerly Pangonis)
Director of Family Services

Valerie Greger, PhD

Director of Research

Susan Keliher

Director of Development
and Communications

Becky Benson

Family Services
Manager

Sydnie Dimond

Development and Communications Manager

Cynthia Perreault-Micale, PhD.

Research Associate

Board of Directors

Officers

President

Oralea Marquardt, LCSW

Vice President

Sara Scaparotti

Treasurer

Michael Richards

Secretary

Lisajane Romer

Past President

Staci Kallish, DO

Directors

Lauren
Celano

Gerry
Cox, MD, PhD

Bonnie
Davis

Amber
Franzen

Dawn
Jacob Laney, MS, CGC, CCRC

Jonathan
Katz

Martha
Kleinman

Jon
Lawrence, JD

Blyth
Lord

Jamie
Ring

Susan Rodon

Susan
Roden

Abby
Rogers

Deborah
Sanders, JD

Carla
Steckman

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:

  • Frances Platt, PhD, Chair
  • Heather Gray-Edwards, DVM, PhD, Co-Chair
  • Miriam (Mimi) Blitzer, PhD
  • Allison Bradbury, PhD
  • Robert (Bob) Desnick, PhD, MD
  • Florian Eichler, MD
  • Tanya Fischer, MD, PhD
  • Mark Haskins, DVM, MS, PhD
  • Michael Kaback, MD, FACMG
  • Edwin Kolodny, MD
  • Gustavo Maegawa, MD, PhD
  • Doug Martin, PhD
  • Marvin Natowicz, MD, PhD
  • David Pleasure, MD
  • Swathi Sathe, MD, MS
  • Miguel Sena-Esteves, PhD
  • Thomas Seyfried, PhD
  • Barbara Shapiro, MD, PhD
  • Evan Snyder, MD, PhD
  • Christopher Stephen, MD
  • Cynthia Tifft, MD, PhD, FACMG
  • Steven Walkley, DVM, PhD
  • Michael Watson, PhD, FACMG

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

  • 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