Project Shui for Tay-Sachs

Inspirational Videos                                                                                                                            Donate Now

*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


The Beautiful Faces of Lysosomal Disease

HideandSeekBoutique October 14, 2009The Lysosome is an amazing little organ. It affects each one of us, and its health is of the utmost importance in our lives. These kids have problems with the lysosomal system and the symptoms they experience cover a wide range of problems.
lysosomal  lysosome  genetic disease  niemann pick  tay sachs  fabry  brain disease  charity  rare disease  philanthropy

Tay-Sachs Talk

rachaeliification December 03, 2009Rachaeli, a 7-year-old with Infantile Tay-Sachs disease, cannot speak but she started to "talk" with grunts, deep breaths and sighs at 5 1/2 years of age.

2009 Cure Tay-Sachs video

DesireeHopf January 13, 2009Tay-Sachs
Category: Education
Tags: Cure  Tay-Sachs

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The Beautiful Faces of Lysosomal Disease 

Tay-Sachs Talk  

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2009 Cure Tay-Sachs video  

featuring Connor Hopf


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