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

Thursday, January 28, 2010 General News
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HADERA, Israel, January 27 Yulia and Gili Ben-Moshe, wholive in a small town in Israel, were confronted with every parent'snightmare: their third child, Lavi then three months old, was diagnosed withCanavan Disease.
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(Photo: http://www.newscom.com/cgi-bin/prnh/20100127/374146 )

To save his life, they have launched an online campaign in social media,on: Lavi's website http://www.give2lavi.org, Twitter(http://twitter.com/savelife), Facebook (http://www.facebook.com/Give2Lavi)and SlideShare (http://www.slideshare.net/savelife).
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It is important to remember that children with Canavan disease first losetheir 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 theCell and Gene Therapy Center (CGTC) at the UMDNJ-Robert Wood Johnson MedicalSchool, which develops innovative treatments for Canavan patients.

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

Lavi's only real hope to defeat this disease is by undergoing aninnovative brain surgery, transplanting stem cells into his brain. This is areal opportunity for a radical scientific breakthrough in a conservativefinancial climate. Such a breakthrough would spur interest in the developmentof 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 holdshope for Canavan patients. Since the disease kills off brain cells, Dr. Leonebelieves that implanting stem cells into the brains of children with Canavanwould result in the proliferation of functional brain cells. She is nowtesting her theory in the laboratory, and thinks clinical testing will startas soon as she scientifically proves the efficacy and safety of the stem celltreatment. The clinical protocol to use stems cells to treat Canavan patientsshould be approved within 24 months by the Food and Drug Administration (FDA).

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

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 asUSD200,000 for the research. The challenge, to close the gap, is to raise afurther USD 1,300,000.

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

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

The site URL is http://www.give2lavi.org. Yulia and Gili assure that allthe money raised will to fund the research. They hope that each donor willtell Lavi's story to at least 10 friends, and this way, even with smalldonations they will be able to raise the necessary funds to save their child.

The campaign is supported by social media activity on Twitter(http://twitter.com/savelife), Facebook (http://www.facebook.com/Give2Lavi),SlideShare (http://www.slideshare.net/savelife) and other social mediawebsites, currently followed by over 15 thousand people. The family hopes toattract thousands of people from around the world, in a great initiativeduring January and February, where people will be asked to donate theirbirthday gifts and Valentine's Day presents to help save this inspiring child.

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

For more information visit: http://www.give2lavi.org

Lavi's father, Gili will be raising funds around the world in the comingfive weeks: New York from Jan 31 until Feb 3, Sydney, Australia - 5th untilFeb 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 Email: [email protected] http://www.give2lavi.org

SOURCE Yulia and Gili Ben-Moshe
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