Two Days in the Life of Rachaeli Fier,
a girl with Tay-Sachs disease







Project Shui for Tay-Sachs

Project Shui Home Page                     


Contents
*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
   Respiratory/Secretions
   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

Guestbook
Sitemap


Tay-Sachs Books Found on Amazon



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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.
 
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
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*****
 
Thank You from Shui

Thank you to everyone who donated to the Cure Tay-Sachs Foundation (CTSF) in honor of Shui's Bar Mitzvah and his sister, Rachaeli. You helped raise over $4,500 for the CTSF, and even more if we include the donations made to the National Tay-Sachs and Allied Diseases (NTSAD)!!
*****

What is the Cure Tay-Sachs Foundation?

The Cure Tay-Sachs Foundation, an IRS-approved 501(c)(3) non-profit entitiy. As it states on its web site: 

"The Cure Tay-Sachs Foundation is dedicated to funding the ongoing 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, 
*****

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!

Learn more about the miracle of the Jacob Sheep with Tay-Sachs disease by clicking HERE.


Meet Rachaeli & the Cure Tay-Sachs Foundation


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
Dakota Bihn, a girl with Juvenile Tay-SachsRachaeli's Friends

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

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

Elise: A Child Living with Tay-Sachs - a video with over 51,000 hits on YouTube about Elise Rochman


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