Project Shui for Tay-Sachs

Welcome From Shui

*Video or Pictures of Tay-Sachs

Project Shui Home Page

Welcome From Shui
   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 We Need 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


Welcome From Shui

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. 

When you become a Bar Mitzvah, you usually read a portion from a Torah scroll.    You are also responsible for your own sins once you turn Bar Mitzvah age.  I feel that when you become a Bar Mitzvah, you take on a lot of responsibility. 

The reason I am addressing this today and why we started Project Shui is to raise money for a cure for Tay-Sachs disease.  If you have Tay-Sachs since birth, you most likely will only live to the age of 3 or 4.  My sister, you see, has Tay-Sachs and I feel I have the responsibility to help find a cure.  Tay-Sachs has not only affected my sister, it has had an effect on my whole community.  Left and right, everyone in the community is trying their best to help my sister and our family.

Now, to put this all toge
ther, I would appreciate it if, in honor of my Bar Mitzvah and my sister Rachaeli, and in memory of all those who have died from Tay-Sachs disease, those who are reading or listening to this now would visit The Cure Tay-Sachs Foundation website  to donate money and be a part of finding a cure for this disease.

Thank you.

Return to Top

Website Builder