SEPTEMBER / OCTOBER
 2015


Imagine & Believe 2015
Eighth Annual Boston Benefit on November 5th

NTSAD will host its Eighth Annual Boston Benefit on Thursday, November 5th at the Royal Sonesta Hotel in Cambridge. It will be an inspiring evening that supports NTSAD's mission to care for families and find a cure. 

We'd love you to join us if you're in the area!

This year we will honor Robert K. Coughlin,  President and CEO of  Massachusetts Biotechnology Council. Bob's leadership at MassBio emphasizes that patients must be in the center of all conversations. As a father of a child with a genetic disease, he is personally driven to find treatments. We salute Bob for his commitment and for adding his voice and actions to rare disease advocacy.

Sponsor & Ad Book Deadline Submission is OCTOBER 9TH.
If you wish to sponsor the benefit, place an ad in the evening's program book, contact Joan Lawrence by email here. 

RSVP by OCTOBER 26TH for an evening to Imagine & Believe!

 

NTSAD Funds Carrier Screening Project
A Unique Opportunity for Prevention
NTSAD, JScreen/Emory University, and Counsyl have entered into a formal agreement to fund and conduct a research study that will provide essential information for the future transition of Tay-Sachs enzyme screening to newer genetic screening testing methods.

NTSAD, together with the Mathew Forbes Romer Foundation, Evan Lee Ungerleider Fund of NTSAD, the New York Area Fund, and the Cameron and Hayden Lord Foundation, is funding this important study. The goal of this project is to assist with classification of rare variants through correlation of HexA enzyme analysis with sequencing results in a publicly available database.

Stay tuned for future news regarding this new research study.

A Step Forward in Europe
European Partner Foundations Start a Registry
CATS LogoThe Cure and Action for Tay-Sachs (CATS) Foundation based
in the UK and Accion y Cura para Tay-Sachs (ACTAYS) based in Spain have collaborated with OpenApp to develop a European patient registry. As CATS founder, Dan Lewi, explained, "This registry will enable us to record in detail all those people affected by the diseases. It will also help us begin to build a deeper understanding of the prevalence of Tay-Sachs and Sandhoff disease in Europe and the onset of the different symptoms and the various different gene mutations of the diseases."

NTSAD currently funds several natural history studies with the goal to better understand the progression of all forms of Tay-Sachs, Sandhoff, GM1 and Canavan diseases. If you are a family that has not filled out a form for NTSAD, contact Diana Pangonis, Director of Family Services, here.
Opening Doors
Ensuring Access to Clinical Trials Act of 2015 (S. 149) Passes in the House and U.S. Senate
Margolis, mollie & mom This act will allow individuals and families better access to clinical trials without the income-related barriers. 

Today, 30 million people and their families have added hope that their tremendous unmet medical needs are one step closer to being addressed. Studying one rare disease can often lead to understanding of other rare diseases, as well as understanding of more common diseases. - Peter Saltonstall, President and CEO, National Organization of Rare Disorders (NORD)

To learn more about the Ensuring Access to Clinical Trials Act
(S. 139), visit the link below and stay tuned to future calls for action. Together we can!
thank you.

IN THIS ISSUE


NTSAD friend, Cary Berman, shares his story in his newly published book, "Born with Tay-Sachs." It is enlightening and inspiring. 

Order his book through Amazon or Barnes & Noble!


Support NTSAD's mission with every purchase made on Amazon. 

Sign on here and select 
National Tay-Sachs & Allied Diseases as your charity of choice. 


NTSAD Family Funds
A Way to Honor Loved Ones and Make a Difference 

Over the years, families have chosen to extend the legacy of their loved ones by establishing funds within NTSAD. It has become a beautiful way to have a direct impact on how families and individuals are helped. To learn more, visit the NTSAD Family Funds page here.
Upcoming Events 

October 17th
Quail Creek Golf Club
Indianapolis, Indiana

October 17th
Carroll Valley Park
Carroll Valley, Pennsylvania

October 20th
Meadow Brook Club
Jericho, New York

November 5th
Cambridge, Massachusetts

Stay Connected & Keep Up with NTSAD Everyday!

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 national tay-sachs & allied diseases association (ntsad)
 susan kahn, executive director (email here)
2001 beacon street
 joan lawrence, development director (email here)
suite 204
 diana pangonis, family services & communications director (email here)
boston, ma 02135
 becky benson, conference coordinator (email here)
(617) 277-4463
 ingrid miller, office manager (email here)

  alison perkus, development associate (email here) 
www.NTSAD.org