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Leading the Fight to treat and cure
Tay-Sachs, Canavan and related diseases

News

NTSAD New York Area Chapter Transitions Administration to NTSAD

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. 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:

Sunday, September 7, 2014

NTSAD Fun Walk in honor of Danny Kenny

(Danny is bravely fighting Tay-Sachs disease)

58 E. Central Avenue Field

Pearl River, New York 

 

UPDATE: Nearly $10,000 was raised with 

approximately 200 people participating. 57 people

were tested for the Irish Carrier Screening Study!

           

NTSAD 2015 Calendar

Dedicated to the memory of Fran Berkwits

Calendar ad deadline is November 15, 2014.

Ad prices range from $350 for full page down to

$5 for a greeting

Click here for more information.

 

 

 

 

The chapter and its fearless co-president, Marion Yanovsky, were celebrated at a fundraiser on May 8th in Manhattan. Nearly $80,000 was raised which will fuel the work they began 57 years ago. 

View the embedded image gallery online at:
http://www.ntsad.org/index.php/news#sigProIdd477e437a4

$35,000 Postdoctoral Fellowship RFA

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.

The RFA and guidelines for application are available on the CODRT website by clicking on the link below, then on Tay-Sachs and related disorders.

http://www.med.upenn.edu/orphandisease/rare-disease-overview.shtml

 

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.

Click here for Postdoctoral Fellowship Pre-application

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. Please view their membership details here.

2014 Day of Hope on September 20th

Bringing Communities Together

This Annual "Day of Hope" Event to Fund Research brings NTSAD families and their communities together for one day every September. From California to England, hope is shared through pancakes, glasses of lemonade, plates of spaghetti and many miles walked.

 

It is imperative to keep hope alive by funding important research work that could potentially lead to an effective treatment for these rare diseases. Funds raised on these Days of Hope go directly to funding NTSAD's Research Initiative.

Nearly $90,000 has been raised since our First Annual Day of Hope on September 18, 2011. 

2014 Day of Hope

This year's official Day of Hope is on Saturday, September 20th; however any event leading up to or after this date can still be a considered a Day of Hope! Our goal is to raise at least $50,000 for research! To see what events are happening this year, visit the NTSAD Events page. If you want to host an event and need help getting started, call Joan Lawrence (This email address is being protected from spambots. You need JavaScript enabled to view it. ) or Diana Pangonis (This email address is being protected from spambots. You need JavaScript enabled to view it. ) - they're ready to help!

Resources

Be sure to check out the press release templates, brochures, and banners that are available for your event. Visit Day of Hope Resources

Photo Gallery

View the embedded image gallery online at:
http://www.ntsad.org/index.php/news#sigProIdacf1f906d3

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

 

 

 

 

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