Canavan Pioneers
 Project Shui for Tay-Sachs

The Greatest Discovery One Can Make is That Nothing is Impossible - Help Save the Life of Lavi

By Yulia And Gili Ben-moshe, PRNE
January 18th, 2010

HADERA, Israel, January 27 - Yulia and Gili Ben-Moshe, who live in a small town in Israel, were confronted with every parent's nightmare: their third child, Lavi then three months old, was diagnosed with Canavan Disease.

To save his life, they have launched an online campaign in social media, on:
Lavi's website,
Facebook (
and SlideShare (

It is important to remember that children with Canavan disease first lose their sense of sight, then their hearing and their motor functions. Usually, before age 4, the disease kills off their brain cells and the children die.

Short time after Lavi's diagnosis, his parent went online and found Dr. Paola Leone , the leading American expert on Canavan disease who manages the Cell and Gene Therapy Center (CGTC) at the UMDNJ-Robert Wood Johnson Medical
School, which develops innovative treatments for Canavan patients.

Today, at 20 months, Lavi is considered a medical miracle. He is progressing neurologically - he can see and hear - defying previous dire diagnoses. But unfortunately the existing drugs alone will not slow down the progression of the disease.

Lavi's only real hope to defeat this disease is by undergoing an innovative brain surgery, transplanting stem cells into his brain. This is a real opportunity for a radical scientific breakthrough in a conservative financial climate. Such a breakthrough would spur interest in the development of new treatments for Tay Sachs, Rett Syndrome, Multiple Sclerosis,
Parkinson's disease, Alzheimer's Disease, etc.

Dr. Leone is conducting basic scientific stem cell research that holds hope for Canavan patients. Since the disease kills off brain cells, Dr. Leone believes that implanting stem cells into the brains of children with Canavan would result in the proliferation of functional brain cells. She is now testing her theory in the laboratory, and thinks clinical testing will start as soon as she scientifically proves the efficacy and safety of the stem cell treatment. The clinical protocol to use stems cells to treat Canavan patients should be approved within 24 months by the Food and Drug Administration (FDA).

The only barrier between Lavi and this surgery is a budget of USD1.5 Million.

The family with their resources and the open heart of the Israeli people, managed to raise USD 500,000 for Lavi's medical treatments, as well as USD200,000 for the research. The challenge, to close the gap, is to raise a further USD 1,300,000.

As we are facing a critical time in Lavi's life, there is no other choice but to approach the generous philanthropists of the world to ask for support.

The family partnered with an Israeli start-up, called give2gether, which developed an innovative platform for micro-philanthropy. They built a website which chronicles Lavi's life journey, and enables grass roots fundraising.

The site URL is Yulia and Gili assure that all the money raised will to fund the research. They hope that each donor will tell Lavi's story to at least 10 friends, and this way, even with small donations they will be able to raise the necessary funds to save their child.

The campaign is supported by social media activity on
Twitter (,
Facebook (,
SlideShare ( and other social media websites, currently followed by over 15 thousand people. The family hopes to attract thousands of people from around the world, in a great initiative during January and February, where people will be asked to donate their birthday gifts and Valentine's Day presents to help save this inspiring

"It's a very hard for my wife and me to face this ordeal," says Gili Ben Moshe, "but Lavi came into this world with a purpose. We believe it's our privilege to fight for Lavi's life and for the lives of other children who have this lethal disease."

For more information visit:

Lavi's father, Gili will be raising funds around the world in the coming five weeks: New York from Jan 31 until Feb 3, Sydney, Australia - 5th until Feb 10 , from Feb 10 to 17 in Melbourne, 17 to 24 in Oakland and 24 to Mar 1 Melbourne .

    Contact: Gili & Yulia Ben Moshe
US Mobile +1-6099692240


Contact: Gili & Yulia Ben Moshe, US Mobile +1-6099692240, Email: gili at

 Thank you Canavan Pioneers

Click Arrow for Audio:

The Cure Tay-Sachs Foundation has done what Shui's mother fantasized about doing 6 1/2 years ago when Rachaeli was first diagnosed - and that was to raise private funds to find a gene therapy cure for Tay-Sachs disease.  At that time, Dr. Paula Leone, from the Robert Wood Johnson School of Medicine in New Jersey, had created the gene therapy for Canavan disease and had already tried it on humans.  It was all-the rave at the first National Tay-Sachs and Allied Diseases (NTSAD) Conference Shui's family attended.  After the conference, Shui's mother was excited and optimistic that the obvious next step for this particular researcher would be to do the same for Tay-Sachs.

After corresponding with Dr. Leone, Shui's mom found out that it would be feasible to start the research - the lab was ready and experienced - but they were short $1.2 million for the start up research.  She was left confused and wondering how on earth the Canavan families managed to raise the money.

Shui's family felt like they were barely getting by.  They didn't know how much time they would have with Rachaeli.  The conflict between their desire to search for a cure and their physical and emotional need to spend time with Rachaeli was put to an end. They didn't pursue the $1.2 million dollar search for a cure.

They continued to pray for miracles, and their miracle came in the form of a little girl with Juvenile onset Tay-Sachs  named Dakota Bihn.  Dakota's family started the CTSF and have been fulfilling the fantasy that Rachaeli's mother had years ago. 

We have to thank the Canavan gene therapy researchers and the Canavan children who took part in the first gene therapy trials, for their vision, perseverance, and courage.  Without these pioneers, the Tay-Sachs gene therapy research may not be where it is today. 

Back to top

*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


Website Builder