NTSAD New York Area Chapter Transitions Administration to NTSAD
Last Updated: Tuesday, 16 September 2014 18:54
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.
$35,000 Postdoctoral Fellowship RFA
Last Updated: Thursday, 21 August 2014 16:05
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.
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
Last Updated: Tuesday, 28 October 2014 16:23
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.
As of today, over $130,000 has been raised since our First Annual Day of Hope on September 18, 2011.
2014 Day of Hope
) - they're ready to help!
Be sure to check out the press release templates, brochures, and banners that are available for your event. Visit Day of Hope Resources
2014 Imagine & Believe: An Evening to Benefit NTSAD
Last Updated: Thursday, 25 September 2014 17:42
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, founding and former Director of the Office of Orphan Disease Research at the National Institutes of Health (NIH).
There are several ways to support this benefit:
or (617) 277-4463.
Download the sponsorship/program book ad form here.
To see pictures from last year's event, visit this page.
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Last Updated: Monday, 21 July 2014 23:18
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2014 Million Bike Ride for Research
Last Updated: Tuesday, 22 July 2014 19:00
The Million Dollar Bike Ride, held on May 3, 2014 in Philadelphia, exceeded its goal and raised $1.4 million for rare disease research!
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.