Project Shui for Tay-Sachs

Faces-Lysosomal Disease
The Beautiful Faces of Lysosomal Storage Diseases
and the
Hide & Seek Foundation

*Video or Pictures of Tay-Sachs

Project Shui Home Page

Welcome From Shui
   How Close are we to a Cure?
   *Rachaeli's Friends
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*Bar Mitzvah Video Invite
What is Project Shui?

Thank You From Shui
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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


 List of Lysosomal Disorders

Activator Deficiency/GM2 Gangliosidosis
Cholesteryl ester storage disease
Chronic Hexosaminidase A Deficiency
Danon disease
Fabry disease
Farber Disease
Gaucher Disease Type I
Gaucher Disease Type II
Gaucher Disease Type III
GM1 Gangliosidosis - Infantile
GM1 Gangliosidosis - Late infantile/Juvenile
GM1 Gangliosidosis - Adult/Chronic
I-Cell disease/Mucolipidosis II
Infantile Free Sialic Acid Storage Disease/ISSD
Juvenile Hexosaminidase A Deficiency
Krabbe Disease/Infantile Onset
Krabbe Disease/Late Onset
Metachromatic Leukodystrophy
Mucopolysaccharidoses disorders
Pseudo-Hurler polydystrophy/Mucolipidosis IIIA
MPSI Hurler Syndrome
MPSI Scheie Syndrome
MPS I Hurler-Scheie Syndrome
MPS II Hunter syndrome
Sanfilippo Type A/MPS III A
Sanfilippo Type B/MPS III B
Sanfilippo Type C/MPS III C
Sanfilippo Type D/MPS III D
Morquio Type A/MPS IVA
Morquio Type B/MPS IVB
MPS IX Hyaluronidase Deficiency
MPS VI Maroteaux-Lamy
MPS VII Sly Syndrome
Mucolipidosis I/ Sialidosis
Mucolipidosis IIIC
Mucolipidosis IV
Multiple sulfatase deficiency
Niemann-Pick disease Type A
Niemann-Pick disease Type B
Niemann-Pick disease Type C
Neuronal Ceroid Lipofuscinoses
CLN6 Disease - Atypical Late Infantile
CLN6 Disease - Late Onset variant
CLN6 Disease - Early Juvenile
Batten-Spielmeyer-Vogt/Juvenile NCL/CLN3 disease
Finnish Variant Late Infantile CLN5
Jansky-Bielschowsky/Late infantile CLN2/TPP1 Disease
Kufs/Adult-onset NCL/CLN4 disease
Northern Epilepsy/variant late infantile CLN8
Santavuori-Haltia/Infantile CLN1/PPT disease
Pompe disease/Glycogen storage disease II
Sandhoff Disease/Adult Onset/GM2 Gangliosidosis
Sandhoff Disease/GM2 Gangliosidosis - Infantile
Sandhoff Disease/GM2 gangliosidosis - Juvenile
Schindler disease
Salla disease/Sialic Acid Storage Disease
Tay-Sachs/GM2 gangliosidosis
Wolman Disease

The Lysosomal Disease family is large, with over 50 unique disorders, such as Tay-Sachs, Gaucher, Niemann-Pick, Batten, Fabry, Krabbe and Pompe. There are no cures and few therapies to decrease the severity of symptoms of these disorders. Lysosomal Disease is the leading cause of mental retardation. It causes muscular dystrophy, blindness, brain, heart, and liver disease. 

The Hide & Seek Foundation would like to spread awareness of all lysosomal disorders with the goal of finding cures. They are currently focussing on Niemann Pick Type C disease (NPC) and are working with SOAR, Support of Accelerated Research for Niemann-Pick Type C.

Below are some videos made by the Hide & Seek Boutique on YouTube to raise awareness for this family of diseases. Alec Baldwin Is featured in the third one.

The web site for the Hide & Seek Foundation for Lysosomal Disease Research is

The Beautiful Faces of
Lysosomal Disease:

Uploaded by  on Oct 14, 2009

The 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.

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Welcome to the Hide & Seek Foundation

Uploaded by  on Oct 14, 2009

A little piece about the Foundation, us and how you can help.

You Know What?
Alec Baldwin and
LysoKid, Tristen Cortes, 
Tell us What's Up

Uploaded by  on Oct 9, 2009

Lysosomal Disease is killing our kids. It's time we know.

Alec Baldwin Movies and Memorabilia on 

Lyso What??

How Can You Know What it is if
You Can't Even Say It?

Uploaded by  on Oct 9, 2009

Lysosomal Disease is the leading cause of mental retardation. It causes muscular dystrophy, blindness, brain, heart, liver and bone disease. It's time you know.

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