Give Lavi the gift of "La Vie" (by give2gether)

This is not a request for help, but an invitation an invitation to join us on a journey that begins with saving the life of a 10-month-old child. Visit http://www.give2lavi.org. Our journey will take us towards a treatment that can give life to many children affected by currently untreatable brain diseases. Reading our story costs nothing but a minute of your time.

Eight months ago we, Yulia and Gili Ben-Moshe, were confronted with every parents nightmare: learning that their child has a fatal disease. Eight months ago our third child, Lavi, was diagnosed with a fatal disease called Canavan Disease. The prognosis of children diagnosed with this rare disease is a tragically short life in a vegetative state.

We began a fundraising campaign that culminated in a special report on Israel's most popular TV channel: Uvda. During this report the audience was prompted to donate $2 via SMS, we were deeply moved by the very many hearts that Lavi touched during this TV report, within 48 hours we were indeed able to raise a sufficient amount of funds to continue the Lavi's current therapy and clinical care in the US.

Sadly, the disease is as relentless as ruthless and scientists have already collected evidence showing that the pharmacologic treatment is only temporary and not sufficient to stop the progression of the disease. More than ever we know that time is of the essence because the flawed machinery encoded in the genetic mutations of Canavan patients will compromise and kill brain cells, leading ultimately to death. Replacing the compromised brain cells is a source of hope for the development of a treatment for Canavan disease, and the initiation of a groundbreaking clinical trial is needed to realize this aim. The successful completion of a clinical trial will provide valuable data for cell transplantation therapy to many other neurodegenerative diseases. In the current financial climate, research and donor derived funds are scarce, and we are facing a major challenge to raise $1.5M to co-finance and support the development of this landmark cell-based therapy for neurodegenerative disorders . Beyond our personal concern for Lavi, 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, Metachromatic Leukodystrophy. Rett Syndome, Multiple Sclerosis, Vanishing White Matter Disease, Parkinson's Disease , Alzheimers Disease, etc.

We would be grateful if you could consider the possibility to join us on this journey so that Lavi and many others may benefit from this revolutionary procedure. We are now in the process of setting up a grass-roots global online campaign for Lavi and all those future kids. Help us help Lavi, but even more important, with your kind activism, you can make a real difference in support of this landmark cell-based therapy for neurodegenerative disorders

Category:

Nonprofits & Activism

Tags:

• lavi
• neurodegenerative
• disorders
• Canavan
• disease
• grassroots
• online
• philanthropy
• Uvda
• Paola
• Leone
• give2gether
• parkinson
• Israel

[musicforgirls]

Gili spoke at my synagogue today. I was almost in tears.

[yael3673]

he is gorgeous!!! i pray he'll be well soon. my love to this amazing family.

[adidilad]

hi to u all; lavi needs all the help and hope

i wish him all the best

[KinuyHaviv]

I hope you succeed! don't lose hope, Yulia and Gili!

Be strong, and good luck!

I keep my fingers crossed for you!

[ppooiiuu3]

Amazing and brave family the movie very touching I will forward this to all my contacts

[ppooiiuu3]

Amazing and brave family the movie very touching I will forward this to all my contacts

[TruthfulMormon]

I just saw this video. I wish you both the best with your baby. My goodness, Lavi is the most beautiful baby I have ever seen. So beautiful. I am not just saying this because all of the odds that he has faced. But he truly is the most beautiful baby I have ever seen. Please take care and know that you are in many peoples thoughts and prayers.

[sharontili]

How is Lavi doing? I saw the movie at Uvda back in Jan ...any progress? Wish you guys all the best

[yoavreut1999]

Yulia - we look forward to get active as part of your campaign

[do4zo]

Very touching.

I hope you succeed!