Project Shui for Tay-Sachs

Home Page 2    


*Video or Pictures of Tay-Sachs

Project Shui Home Page

Welcome From Shui
   What is the Cure Tay-Sachs Foundation?
   How Close are we to a Cure?
   *Rachaeli's Friends
   Sign up for Updates
*Bar Mitzvah Video Invite
What is Project Shui?

Thank You From Shui
   Internet Ads&Marketing

What is Shavuot?
Shavuot & Shui's Sister

What is Tay-Sachs?
Tay-Sachs Diagnosis:

      Part I

      Part II

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

*Inspirational Videos

*Beautiful Faces of Lysosomal
*Tay-Sachs Talk
   *Connor Hopf Cure Tay-Sachs
   *2010 Faces of Tay-Sachs
*My Soul Sister-Molly Grace
*Our Star Dakota
   *Rachaeli's Song of Love
   *Elise-A Child Living with Tay-Sachs
   *Last Laugh
   *Meet Gavin

Tay-Sachs in the Media
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
   *Law & Order SVU MERCY
21 Below Documentary
Legal & Financial Issues

   What is Wrongful Life?
   Right to Live in the United Kingdom
   How to Pay Medical Bills?
   Social Security Disability
   CHIPRA-Insurance for Kids
   Medicaid Waiver Programs
   Katie Beckett Medicaid
   Who is Katie Beckett?
Why Do We Need The
Katie Beckett Waiver?
Eligibility for Katie Beckett
   Katie Beckett in Georgia
Katie Beckett's Going Home
   (from People Magazine 1981)

Treatment or Cure
Canavan Pioneers
   *Gene Therapy
   Jacob Sheep Sensation
   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
   Substrate Inhibitors
   Should I Try Zavesca?
   Letter for Insurance 
      Approval for Zavesca
   Chaperone Therapy

In-Home Medical Care
Home Health Care
   Coping Strategies
Coping with Humor w/ Shui's Dad
Rachaeli's Story
Shocked by Tay-Sachs Article
The Project Shui Family
Mommy's Online Journal
   Abba's Online Journal
   Shui's Fun Pages


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Sunday, July 4, 2010 11:59 PM

Donate Now button to Cure Tay-Sachs Foundation website


How does this help Project Shui? 

We want to make money for the Cure Tay-Sachs Foundation through internet advertising.  To make this happen, we need decent Google rankings.  To get good rankings, we need TRAFFIC and unique and substantial content on our website.  It's our responsibility to create the unique content.  We ask you to help us with the traffic. 

By passing on our site to others, helping us create links to our site, and checking in with us when we make updates, you can increase our traffic.

THANK YOU to everyone who donated to the Cure Tay-SachsRachaeli Fier, a now 8-year-old with Tay-Sachs disease with brother,Shui Foundation in honor of Shui's Bar Mitzvah and his sister, Rachaeli.  Our last tally added up to $4,217 going to the CTSF - and even more if you include the donations made to the National Tay-Sachs and Allied Diseases - NTSAD!!  
Click here for Shui's Thank You Letter.
Please Note:  the $18 matching program is Still In Effect. For every donation made to the CTSF in honor of Shui's Bar Mitzvah - and now Rachaeli's 8th Birthday - an additional $18 donation, or Chai - which means LIFE - will be made by a kind donor. Click here to Donate Now.
What is Project Shui?                                       

Project Shui is a Bar Mitzvah Project, a web-based fundraiser for the Cure Tay-Sachs Foundation, a 13-year-old boy's struggle to help find a cure for his 7-year-old sister with Tay-Sachs, and an internet marketing endeavor. 
Rachaeli Fier, an 8-year-old with Tay-Sachs doing her exercises
The Project Shui web site is evolving into a substantial source for everything Tay-Sachs, with an emphasis on living with Tay-Sachs - as a patient, a parent, a sibling, a grandparent, or as a caregiver.  We are trying to include as many pictures and videos of Rachaeli and her friends so that you, the Project Shui visitor, can try to get a feel for our new and enriched lives since learning that our daughter/sister/granddaughter/friend would not live past early childhood.
Click here to read more ...

Welcome From Shui
(This was our original home page welcome.  Since Shui's Bar Mitzvah has passed, his letter and video were moved to a separate web page)

Hi. My name is Shui and I'm becoming a Bar Mitzvah this month.

When a Jewish boy turns 13, he becomes a Bar Mitzvah.  Bar Mitzvah literally means son of the commandments.  Most people use the term to mean the day the child turns 13.  At this age, the boy becomes a man. . .
Click here to read more
 What is the Cure Tay-Sachs Foundation?

Cure Tay-Sachs Foundation, an IRS-approved 501(c)(3) non-profit entity. As it states on it's web site:
"The Cure Tay-Sachs Foundation is dedicated to funding the on-going research needed to find treatments and a cure for Tay-Sachs Disease.

Once the cure for Tay-Sachs has been found - and we will find it! - we will dedicate our efforts to promoting carrier-testing and Tay-Sachs awareness initiatives."

To make a tax-deductible donation to the Cure Tay-Sachs Foundation, click here or any of the "Donate Now" buttons found throughout this web site .  They will take you directly to the CTSF Donation Page. 

To go to the Cure Tay-Sachs Foundation Home Page, click here:


 How close are we to a Cure?
Gene therapy research, through the Tay-Sachs Gene Therapy Consortium, is forging ahead with studies on Tay-Sachs mice, Tay-Sachs cats, and now, Tay-Sachs sheep.  It's an exciting time for us.  If the Tay-Sachs sheep respond to gene therapy, we could have gene therapy trials in humans within the next year and a half!


 Rachaeli's FriendsDakota Bihn, a girl with Juvenile Tay-Sachs

My sister's name is Rachaeli and she has many friends who have diseases such as Tay-Sachs, Sandhoff, GM-1, and Canavan.  Rachaeli was diagnosed on December 4, 2003, when she was a little over a year old.  She is now, miraculously, 8 years old. 

Emma Rabinowitz and Elise Rochman, 2 girls with Tay-SachsIt was an honor to have her with me on my
Bar Mitzvah!!

Unfortunately, over the past 6 years, many of Rachaeli's friends passed away.  The following video link is of Rachaeli's friends who are living and desperately need a cure. 

2010 Faces of Tay-Sachs: NTSAD Conference-St. Petersburg,Florida-April 2010

This second video link was made when her friend Molly Grace died; it includes many of her other friends who have already passed away.  Molly Grace Jordan a girl with Tay-Sachs

In Memory of my Soul Sister, Molly Grace
Sept. 26, 2003 - March 8, 2010

For additional inspirational videos:

Our Star Dakota - the reason we have the Cure Tay-Sachs Foundation
Rachaeli's Song of Love- a personalized song from the Songs of Love Foundation
Last Laugh - the beautiful giggles of Eliott Shotz shortly before his passing
Meet Gavin - a boy with Juvenile onset Tay-Sachs fighting for a cure

Beautiful Faces of Lysosomal - video by the Hide and Seek Foundation to educate the world about Lysosomal Storage Diseases, of which Tay-Sachs is one.
Tay-Sachs Talk
- video of Rachaeli Fier having a "conversation" with her father
Cure Tay-Sachs - video in honor of Connor Hopf
Gene Therapy in Tay-Sachs Mice - the start of this journey to find a gene therapy cure
Dakota's Dream - an educational video about Tay-Sachs disease

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