NTSAD
Spotlight on Imagine & Believe
NTSAD recognized its 60th anniversary throughout 2017 by honoring those families and individuals who established and expanded the NTSAD community, by recognizing our present achievements, and by embracing goals for the future in the areas of family support, research advances,
NTSAD celebrated its 60th Anniversary Imagine & Believe event at the Royal Sonesta in Cambridge on Thursday, November 9th. Highlights of the night included a thoughtful discussion with honorees Dr. David Meeker and Professor Timothy Cox. Moderated by NTSAD’s former Executive Director, Jayne Gershkowitz, topics included what motivates their work in the rare disease community, scientific progressions, and the value that an organization like NTSAD can have on both families and supporters. This discussion was followed by heartfelt remarks by Talia’s mother and NTSAD parent, Carla Steckman. Joining Carla and honorees, David and Tim, were 190 guests who raised over $120,000—the event’s largest total since its inception!
BOARD OF DIRECTORS
SCIENTIFIC ADVISORY COMMITTEE
President Blyth Lord
Chairs Frances Platt, PhD Jodi Hoffman, MD (Vice Chair)
Vice President Staci Kallish, DO Treasurer Alex Wright Secretary Ruth Feldman Directors Merle Adelman Stewart Altman Risa Asnen Monica Gettleman Karen Grinzaid William Johnson, PhD Meryl Kallish Staci Kallish Edna Kaplan Amy Katz, Esq. Sophia Pesotchinsky Kevin Romer Alec Rubenstein Amy Speak Shari Ungerleider Marion Yanovsky Past Presidents 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*
Members Miriam Blitzer, PhD Robert Desnick, PhD, MD Florian Eichler, MD Mark Haskins, VMD, MS, PhD Michael M. Kaback, MD, FACMG Edwin H. Kolodny, MD Heather Lau, MD Paola Leone, PhD Gustavo Maegawa, MD, PhD Marvin Natowicz, MD, PhD Thomas N. Seyfried, PhD Barbara Shapiro, MD, PhD Evan Y. Snyder, MD, PhD Cynthia J. Tifft, MD, PhD, FACMG Steven U. Walkley, DVM, PhD Michael S. Watson, PhD, FACMG Corporate Advisory Council Oved Amitay Ritu Baral Laura Cohen John Gordon Michael Gladstone Kate Haviland Walt Kowtoniuk, PhD Greg Licholai, MD Joan Keutzer, PhD
NTSADMission
National Tay-Sachs & Allied Diseases Association
NTSAD leads the fight to treat and cure Tay-Sachs, Sandhoff, GM1, Canavan and related genetic diseases, and supports affected families and individuals in leading fuller lives.
National Tay-Sachs & Allied Diseases Association 2001 Beacon Street • Suite 204 Boston, Massachusetts 02135 (617) 277-4463 • (800) 90-NTSAD www.NTSAD.org Executive Director Susan R. Kahn Director of Development Patrick Woods Director of Family Services Diana Pangonis Development & Administrative Associate Tsitsi Moyo Conference Coordinator Becky Benson
* deceased
and preventative outreach and education.
Design by Beth Bendavid-Val
2017 I ANNUAL REPORT