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Tay-Sachs, Canavan and related diseases

News

2014 Imagine & Believe: An Evening to Benefit NTSAD

Join us on Thursday, November 13, 2014 at the Royal Sonesta Hotel in Cambridge. Imagine & Believe with us for an inspiring evening to benefit NTSAD, our families and research. We are thrilled to honor Stephen C. Groft, former Director of the Office of Orphan Diseases at the National Institutes of Health (NIH). 

There are several ways to support this benefit:

  • Buy a ticket to attend at $165 each;
  • Sponsor the evening at one of several levels;
  • Purchase an ad to commemorate the evening; or
  • Make a gift in honor of NTSAD

Please contact Joan Lawrence, Director of Development, at This email address is being protected from spambots. You need JavaScript enabled to view it. or (617) 277-4463.

To see pictures from last year's event, visit this page.

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2014 Million Bike Ride for Research

The Million Dollar Bike Ride, held on May 3, 2014 in Philadelphia, exceeded its goal and raised $1.4 million for rare disease research!

UPenn's Center for Orphan Disease Research and Therapy more than matched the funds raised which means that $35,000 will allow for a dedicated post-doctoral fellowship grant on NTSAD's behalf! The Request for Applications (RFA) will be available in early August. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. if you wish to receive a copy of the RFA.

Mark your calendars for next year's ride - May 9, 2015!

Read WHYY's coverage of this year's ride and see the slideshow here featuring Team Captain Ruth Feldman!

Many thanks to Team NTSAD for riding and raising nearly $2,500! The Penn Medicine Center for Orphan Disease Research and Therapy (CODRT) partnered with Rare Disease Cycling to focus efforts on rare disease research. Stay tuned in the months to come about next year's ride! To learn about the CODRT's work, read more here

 

 

 

Supporting NTSAD's 2014 Annual Fund

Your generosity represents hope. As we approach a new year, we reflect on all that we accomplished in the past year.

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Additional News Topics

  • Jacob's Cure October 8, 2013

       J A C O B ' S  C U R E a fight against Canavan Disease            It is our pleasure to welcome the friends of...

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