Finding a Cure for Tay-Sachs Disease
 Project Shui for Tay-Sachs

Thank You From Shui

This is a letter that was sent to the generous donors who contributed to the Cure-Tay Sachs Foundation in honor of Shui's Bar Mitzvah.
The $18 matching program is still active.  Please take advantage and donate today!
  Click here to donate now.
*Video or Pictures of Tay-Sachs

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Thank You From Shui
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What is Tay-Sachs?
Tay-Sachs Diagnosis:

      Part I

      Part II

   Genetics Made Fun
      *Lysosomes The Movie
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Narrated by Alec Baldwin
   Genetics 101 Article

*Inspirational Videos

*Beautiful Faces of Lysosomal
*Tay-Sachs Talk
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   *2010 Faces of Tay-Sachs
*My Soul Sister-Molly Grace
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   *Elise-A Child Living with Tay-Sachs
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   *Meet Gavin

Tay-Sachs in the Media
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
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21 Below Documentary
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   (from People Magazine 1981)

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Canavan Pioneers
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   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
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   Letter for Insurance 
      Approval for Zavesca
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Project Shui: 
Finding a Cure--Saving Lives

Thank you so very much for making a donation to the Cure Tay-Sachs Foundation in honor of Shui's Bar Mitzvah. For your donation, and each of the others, an additional $18 was donated by an anonymous donor. We hope you feel a sense of pride and satisfaction that your donation allowed for another Chai, or Life, to be added to to such a worthy organization.

The Cure Tay-Sachs Foundation(CTSF) has been vital to research efforts to find a cure for Tay-Sachs. Before the CTSF was formed 3 short years ago, the amount of grant money available for Tay-Sachs gene therapy research was minimal.

What the Cure Tay-Sachs Foundation has done over the past 3 years is nothing short of miraculous. They met their goal of raising one million dollars by 2009. But just having the money wasn't enough. They needed a collaborative effort by the different researchers in order to accelerate the process - and so the Tay-Sachs Gene Therapy Consortium was founded.

When Rachaeli was diagnosed with Tay-Sachs over 6 years ago, gene therapy was a theoretical cure. The CTSF, by substantially augmenting the research grant money available, has turned theory into reality. We now have Tay-Sachs mice which have responded to gene therapy. Last year, Tay-Sachs cats received gene therapy and the results thus far have been promising.

Recently, Tay-Sachs was identified in a nearly extinct breed of spotted sheep called Jacob Sheep. These sheep appeared out of nowhere and at just the right time; a large animal model was needed for the research to proceed. Without the sheep, gene therapy trials may never be available for humans. Now there is real hope.

This year, four sheep with Tay-Sachs were born; this is four times the number of affected offspring that were expected when breeding began! In April, they made the trip to Auburn University in Alabama to start their trials with gene therapy.

As you can see, the momentum in this race to find a cure is growing. But the estimated cost of this race is growing along with it. Raising and maintaining the sheep, and the research on the sheep, is estimated to be $500K to $1 million. It's a huge sum of money, but without it, this crucial link in the research process will remain broken and the dreams of gene therapy trials in humans will not be realized.

It is for this reason that we chose the CTSF as the recipient of the money brought in by Project Shui. Time is of the essence and the CTSF is making the most of every minute - and every dollar.

Project Shui is an ongoing project with Bar Mitzvah donations being Part I. We are now fine tuning the metatags for search engine optimization, linking to other sites, improving website content, and writing articles for online article bases. Project Shui is on Facebook, Twitter, and a bunch of social bookmarking sites. Our goal is to bring in money from payper- click, affiliate, and other forms of web advertising, all of which will go to the Cure Tay-Sachs Foundation.

Thank you so much for your donation and for participating in this exciting project.

Sincerely, The Project Shui Family: Eric, Nicole, Yoni, Shui, Ari, & Rachaeli Fier Project Shui

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