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Genetics Made Fun
*Lysosomes The Movie
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Narrated by Alec Baldwin
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*Inspirational Videos
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*Tay-Sachs Talk
*Connor Hopf Cure Tay-Sachs
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*My Soul Sister-Molly Grace
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(from People Magazine 1981)
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Canavan Pioneers
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Article in Forward-Jacob Sheep
*Stem Cell Transplants
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Should I Try Zavesca?
Letter for Insurance
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*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
A slide show
made by Rachaeli Fier's mother of the young attendees at the
annual NTSAD (National Tay-Sachs and Allied Diseases) Conference. St.
Petersburg, Florida. April 2010. There were many newly diagnosed
children at the conference this year, and there was the palpable absence
of those children who succumbed to their diseases since the last
conference. We mourn with those families for their losses and we pray
for the continued strength of the children and their families who are
battling these fatal diseases every day. But miracles are happening all
around us, and they were present at the conference. We have been blessed
by the miraculous finding of sheep with Tay-Sachs disease. These will
provide the large animal model needed to proceed with Gene Therapy
research. A cure is closer than ever! History is in the making!
