Giving Lavi Life 2013

Join this amazing journey - for more details visit Giving Lavi Life

 

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I'm 4 years old thanks to all the love and support of people like you.

The fact is - that a little bit and a little bit more and even just a bit more adds up to a lot.

All that it will take to save me and many other children is a few thousand more friends who will each give $18 or more (18 being "alive", in Hebrew), and invite 10 of their friends to do the same.

Remember: saving me means hope for many others.
 
 
 

Lavi

 
 
 
     
 
 

Together we can make a big difference

 
 

This is not a call for help, but an invitation –to join us on our journey that began with saving the life of a single child. A journey that  takes us towards a treatment that could give life to many children affected by currently incurable  brain diseases. Reading our story costs nothing – just  two minutes of your time.

In July 2008 we were faced with every parent’s nightmare - our third child, Lavi, was diagnosed with a fatal and terminal disease called Canavan Disease. The prognosis of children diagnosed with this rare brain disease is a tragically short life in a vegetative state. Naturally we were devastated by this diagnosis; for days we searched for anyone who would be willing to even attempt to reverse the course of this disease. We found a scientist in the United States who has been the leader in groundbreaking research on Canavan Disease since 1995 -  Dr. Paola Leone, who has developed  innovative medical treatments specifically for Canavan patients. One of these is a pharmacological therapy that Lavi began at the age of three months and succeeded in delaying his brain deterioration. Today, Lavi is a medical miracle – he can see and hear, and is slowly developing  neurologically rather than regressing into vegetative state as predicted in the diagnosis.

 
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AMAZING LAVI

 
 
 
     
 
 

Vote for the real hero of this story

 
 
 
     
 
 

For matching donations or commercial sponsorship/support, please contact us directly

 
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About Dr. Paola Leone and the CGTC

 
 

Paola Leone, Ph.D.Dr. Paola Leone

Dr. Paola Leone is an Associate Professor of Neurosurgery and Director of the Cell & Gene Therapy Center (CGTC). As Principal Investigator at UMDNJ-Robert Wood Johnson Medical School for Gene Therapy for Canavan Disease, she leads all research activities at UMDNJ and the affiliated centers. Her research interests have included in vivo neurochemistry of epilepsy and gene transfer approaches for the treatment of neurological disorders. She has published extensively in the field of CNS gene therapy and conducted the first direct gene therapy trial using a liposome-based vector for a pediatric neurodegenerative disorder. In addition to applications of viral vectors and stem cells, Dr. Leone is studying pharmacological approaches in humans and in animal models of Canavan Disease, Amyotrophic Lateral Sclerosis, Tay Sach’s and other neurological disorders.

 
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Part 1 - Mom and Dad discovering the illness

 
 
 
     
 
 

Australian Support

 
 

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Part 2 - The fight to save me

 
 
 
     
 
 

Lavi's Birthday Celebration

 
 
 
     
 

Campaign Ended

 
 

Thank you for your support!

Raised $15,176 out of $100,000
 
     
 
 

Celebrating your birthday soon?

 
 

Would you consider dedicating your gifts this year to save the life of many kids? 

http://bawandinesh.name/wp-content/uploads/2009/05/birthday-gift-balloon.jpg
Ask your friends for a special gift - the gift of life for Lavi. You could do that by adding a personalized message to show them you care.

Celebrating your birthday soon? 

Most of us get presents on our birthday. Most of them are things you don't really need. If you or someone you know was born in October, consider asking your friends this year for donations instead of presents for your birthday.

Thanks for supporting Lavi's and many kids' journey!

 
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Change Makers

 
 
Sagi R.
Israel
256
visitors
$331
impact
lior chen
Israel
338
visitors
$150
impact
Ayelet D.
Haifa, Israel
652
visitors
$141
impact
Ari Morris
Australia
3
visitors
$90
impact
Einat & Yaniv Yaakubovich
United States
9
visitors
$84
impact
E.L.
Tel Aviv, Israel, Israel
15
visitors
$60
impact
Limor David
Israel
29
visitors
$15
impact
liat tal
Israel
donated: $1,000
Detox Academy, Amsterdam, NL
Amsterdam, Netherlands
donated: $935
מאיה ג.
Israel
donated: $500
Osher E.
Israel
donated: $500
daniel E.
United States
donated: $360
Ron L.
Israel
donated: $250
uri M.
Israel
donated: $250
G.H.
Haifa, Israel
donated: $218
עדנה ז.
Israel
donated: $200
Avi G.
Israel
donated: $200

All Donors
 
     
 
 

US tax-exempt

 
 

Donations in the US are eligible for tax benefits. 

Global Giving

GlobalGiving is a US 501c3 public charity working with give2gether to provide US tax-exempt donation capability to supporters of Giving Lavi Life and Kav Lachaiim.

 

The GlobalGiving Foundation's tax-exempt ID# is 30-0108263.

 
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Lavi's angels around the world

 
 

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Lessons of Lavi

 
 
 
     
 
 

Canavan Disease & Gene Therapy

 
   
     
 
 

A year after Uvda, (Israel's version of 60 minutes)

 
 
 
     
 
 

His laughter can inspire many others

 
 
 
     
 
 

Q&A with Dr. Paola Leone

 
 
Question:

What is the Cell and Gene Therapy at UMDNJ/SOM?

Answer:

The Cell and Gene Therapy Center is a Translational Research Center, in which scientists study laboratory methods that can be used in clinical settings. Translational research is conducted in a way to make the results applicable to the particular population under study. The results are then used to translate the findings into medical practice that can be readily used in real life situations.

These settings include using either Stem Cell or Gene Therapy or both, in order to improve the health of patients affected by Canavan Disease or by other neurodegenerative disorders.

Visit the Cell and Gene Therapy Center online at http://som.umdnj.edu/cgtweb/

Question:

What are the current methods used to treat Canavan Disease?

Answer:

The current method is a pharmacological approach using a combination of drugs and supplements designed to benefit patients affected by Canavan Disease.
The Stem Cell method is still undergoing investigation in the laboratory to test the “proof-of-principle” prior to using it for human applications.

 
     
 
 

Lavi

 
 
 
     
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