Make a gift in honor of Inbar today!
This is Inbar, 6 years old, our third and youngest. When Inbar was born, everything looked good. She was a beautiful, sweet, pleasant baby. A few months later, the doctor thought she was a late bloomer, but when she was 18 months and still wasn’t crawling or talking, we had a few more tests done. She was then diagnosed with a rare genetic disease – ML4.
With few known cases around the world, this genetic disease causes developmental delays, retinal degeneration, gross and small motor dysfunction, and a limited lifespan. Families united and established a non-profit organization in the US, which works night and day to promote research and find a cure. The Foundation’s mission is to fund, support, and promote medical research dedicated to developing treatment and ultimately a cure for this rare condition. Today, a number of studies are being conducted in the US and around the world, and initial experiments have also begun.
Your donation will help us support the research and our efforts to find a cure for our Inbar and other afflicted children around the world.
For donation in Israel: https://web.payboxapp.com/?v=j&g=627c810f8936e50007fc67d6#/
Our US friends can donate via the Donate button on this page.
Inbar is living a happy life and giving hope and love to so many people around her. We thank you very much for your support!
Amnon and Noga Alon
ABOUT THE ML4 FOUNDATION
ML4 is a genetic disease caused by the mutation of a single gene that results in the loss of a protein (MCLN1). This incredibly important protein is required by the body for normal functioning: without MCLN1, children and adults with ML4 suffer from progressive and debilitating loss of gross and small motor function, go blind, develop problems chewing and swallowing, rarely have the ability to speak, cannot walk, and over time, lose many abilities that they work hard to acquire when they are young.
The funds raised by the ML4 Foundation are directed to a research program at Massachusetts General Hospital in Boston. We have been working for several years with a team there to create a gene therapy to treat ML4. We are also funding a large-scale natural history study of ML4, bringing ML4 patients from around the world to the MGH clinic to be seen by specialists in this disease. YOUR DONATIONS made this work possible and allow it to continue at a speedy pace!
If you prefer to donate by check, you may mail it to the following address, and note that it is given in honor of Inbar Alon.
Mucolipidosis IV Foundation
1440 Spring Street NW
Atlanta, Georgia 30309
The ML4 Foundation is a U.S. 501 (c)(3) nonprofit charitable organization.
Tax ID 13-3633501