Project Shui Home Page
THANK YOU to everyone who donated to the Cure Tay-Sachs
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
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.
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.
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
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What is the Cure Tay-Sachs Foundation?
"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, an IRS-approved 501(c)(3) non-profit entity, click the "Donate Now" button above. It will take you directly to the CTSF Donation Page.
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How close are we to a Cure?
Rachaeli's
FriendsMy 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, 7 1/2 years old.
It is 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.
Click to watch the video
This second video link was made when her friend Molly
Grace died; it includes many of her other friends who have already passed away.
In Memory of my Soul Sister
Molly Grace
September 26, 2003 - March 8, 2010
