JULY 2015

21st Century Cures Initiative Moves Ahead
Important Bill Approved by Congress!

NTSAD and the rare disease community is excited to see the House approve the 21st Century Cures Act with a strong, bipartisan vote of 344 to 77. 

This landmark legislation includes policy proposals that could accelerate the pace of discovery, development, and delivery of rare disease treatments and cures, as well as provide hope for patients and their families. In fact, this legislation could potentially allow companies to do much smaller and less expensive trials for diseases like ours - and therefore it would open up research on our diseases that they might not otherwise have considered.

The rare disease community encourages the Senate to move quickly in advancing this legislation through the chamber and to the president's desk. Watch NTSAD news for developments.

 

Milestones That Matter
Medicare, Medicaid & the 
Americans with Disabilities Act
Conf13 LOTS Fifty years ago Medicare and Medicaid were created. Since then over 55 million people are on Medicare and nearly 30 million children are covered by Medicaid and the Children's Health Insurance Program (CHIP).

On July 26, 1990 the American Disabilities Act was signed. Many of NTSAD families have benefited, and been frustrated, by these programs that have brought the struggles of dealing with disabilities closer to the forefront of all our consciousness. While there is still more work to be done, these milestones are worth recognizing.
A Family's Stay on the Cape
A Summer Wish Granted to Annabel

Many of NTSAD's families create "bucket lists" for their children and the whole family as way to capture as many moments as they can while they can. The Make-a-Wish organization often plays a role in how families check off items on those lists.

 

One of NTSAD's families was granted a wish this summer for their daughter, Annabel, who has Tay-Sachs. They spent a week on Cape Cod savoring moments in the sun, by the ocean and pool, eating traditional Cape Cod fare and just being together.


 
They also had the opportunity to visit with another family touched by Tay-Sachs who drove down from New Hampshire to share a few moments with Annabel and her family. As Annabel's mom, Casey, said at one point, "No one snuggles quite like another TS mommy." 

 

NTSAD's Fifth Annual Day of Hope
A Day to Rally and Raise Funds for Research!
The season is upon us to organize lemonade stands, walks, bake
sales and poker runs all in the name of research. On September 19th, 2015, NTSAD, its families, their friends and community worldwide will observe the Fifth Annual Day of Hope. Events are being planned leading up to this day.

Stay tuned to this page on the NTSAD website to see if an event is happening near you or to support hope in general. 

Upcoming Events 

September 12th
Pearl River, New York

Rockett, Texas

16th Annual Eagle for Emily Golf Outing
Indianapolis, Indiana

September 19th
Bay City, Michigan

Fremont, Ohio

October 20th
Seventh Annual 'Fore' Jack Memorial Golf Outing
Meadow Brook Club
Jericho, New York

November 5th
Cambridge, Massachusetts

IN THIS ISSUE



at the Royal Sonesta Hotel in Cambridge, Massachusetts to honor Robert Coughlin, President and CEO of Massachusetts Biotechnology Council (MassBio).

Contact Joan Lawrence at joan@ntsad.org or (617) 277-4463 for sponsorship and ad opportunities.
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NTSAD's partner in screening and awareness, The Jewish Genetic Disease Consortium (JGDC) is undertaking an important new project. It has come to our attention that Kaiser Permanente (California's largest health insurer) has an inadequate carrier screening policy for the Jewish genetic diseases. Currently, screening is only offered to patients if both partners within a couple are Jewish. The couple will then be offered screening for only four (4) diseases (Cystic Fibrosis, Tay-Sachs, Canavan and Familial Dysautonmia). Sadly, as we all know, carriers are going undetected and children are born with these devastating diseases.

The JGDC plans to set up a meeting with Kaiser Permanente to present a heartfelt program detailing the reasons why their screening policy needs to change.

Please contact Shari Ungerleider at her email here if you are or were a Kaiser patient who was not offered screening or if inadequate screening was offered.

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 national tay-sachs & allied diseases association (ntsad)
 susan kahn, executive director (skahn@ntsad.org)
2001 beacon street
 joan lawrence, development director (joan@ntsad.org)
suite 204
 diana pangonis, family services & communications director (diana@ntsad.org)
boston, ma 02135
 ingrid miller, office manager (ingrid@ntsad.org)
(617) 277-4463
 becky benson, conference coordinator (becky@ntsad.org)
www.NTSAD.org
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National Tay-Sachs & Allied Diseases Association | 2001 Beacon Street, #204 | Boston | MA | 02135