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Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

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We're Partnering With The Mighty!

Tay-Sachs, GM1, Sandhoff and Canavan Diseases | The Mighty Partnership | National Tay-Sachs & Allied Diseases Association (NTSAD)

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We're dedicated to helping people with Tay-Sachs disease (and related diseases) in their lives. With this partnership, we'll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

 

Here's an example of the kind of stories on The Mighty: What Does It Mean to Be 'Rare'? You Told Us."

 

Find Our Page On The Mighty 

National Tay Sachs & Allied Diseases Recruits Industry Leaders for Advisory Council


Boston, MA—January 30, 2015--National Tay-Sachs & Allied Diseases, the nation’s oldest rare disease patient advocacy group, is intensifying efforts to find treatments for neurodegenerative disorders with the formation of a Corporate Advisory Council (CAC). Comprised of industry leaders with direct experience in developing, funding and commercializing therapies for rare diseases, the CAC will help NTSAD advance its research programs, build clinical trial readiness and promote the rare disease organization to potential partners by highlighting its access to patients, to animal models and other resources.

In 2013, the FDA granted NTSAD orphan drug designations for a Tay-Sachs and Sandhoff gene therapy treatments. Research is currently in pre-clinical development stages in partnership with the Tay-Sachs Gene Therapy (TSGT) Consortium, whose goal is the initiation of a gene therapy clinical trial for Tay-Sachs disease and Sandhoff disease.

“NTSAD’s rich resources should be attractive to companies interested in bringing a therapy to market for this group of lysosomal storage diseases,” said CAC Chair, Marion Howard, M.D., Ph.D., founder of Cambridge BioStrategies. “To build closer ties with these companies, we have assembled a group of experts in both drug development and commercialization who have not only brought drugs for rare diseases to market, but also have a passion for this field.”


Other CAC members are:

  • Oved Amitay, VP, Head of Commercial, Alnylam Pharmaceuticals
  • Ritu Baral, Managing Director, Senior Biotechnology Analyst, Cowen and Company
  • Michael Gladstone, Life Sciences Group Associate, Atlas Venture
  • Kate Haviland, VP Rare Diseases, Idera Pharmaceuticals
  • Joan Keutzer, Ph.D., VP of Scientific Affairs, Genzyme Corporation
  • Greg Licholai, M.D., VP and General Manager, McKinsey Solutions company Spotlight
  • Bradley Campbell, President and COO, Amicus Therapeutics

Read more about NTSAD's Corporate Advisory Council

The NTSAD New York Area chapter on June 30th transferred its administrative operations to the national office of NTSAD. The work of the chapter will continue in the Tri-state area with its focus on education, awareness and raising funds for research. Read more on the New York Area Fund

A fund, named for co-president, Marion Yanovsky, was created to fund this important work. To give to the Marion Yanovsky Research and Education Fund of NTSAD, donate here.

There are two events happening related to the New York/Tri-state Area:

Saturday, September 12, 2015

NTSAD Family Fun Day in honor of Danny Kenny

(Danny bravely fought Tay-Sachs disease.)

58 E. Central Avenue Field

Pearl River, New York 

 

 

 

           

NTSAD 2016 Calendar

Calendar ad deadline is November 15, 2015.

Ad prices range from $350 for full page down to

$5 for a greeting

Download  2016 Ad Subscription Form

View 2015 Calendar

 

 

 

 

On May 3rd, 2014, Team NTSAD rode in the Million Dollar Bike Ride which raised funds for research through the University of Pennsylvania's Center for Orphan Disease Research and Therapy (CODRT). As a result the CODRT announced a Request for Applications (RFA) for a $35,000 Postdoctoral Fellowship in Tay-Sachs, Sandhoff, GM-1, or Canavan disease.

Read more about ODC Funding.

 

 

The Timeline for the RFA/grant Program is as follows:

Pre-application deadline: September 15, 2014, documents are to be uploaded no later than 5pm.

Invitation to submit a Full-application by September 18, 2014

Full-application deadline: October 15, 2014 (by invitation only) documents are to be uploaded no later than 5pm

Anticipated start date: December 1, 2014

All applicants must become a member in the Center for Orphan Disease Research and Therapy to participate in this RFA. P

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