As preparation for becoming a Bar Mitzvah I chose a Mitzvah project that is personal to me. My project is to raise money for and awareness of Gaucher Disease. I am doing this because some of my family and friends have this disease including me, and most people don't even know it exists.
Gaucher is a horrible disease that makes it impossible for the body to break down certain fats. As a result of this, these fats end up getting stored in the spleen and liver, which can be dangerous. This can cause bone damage, bleeding problems, and other serious side effects. I am a person who LOVES sports, and having a disease that can make me tired all the time, or weaken my bones or expose my liver and spleen to serious injury is very worrisome.
Approximately 1 in 450 people of Ashkenazi Jewish descent have some form of the disease. There are different types of Gaucher Disease and thankfully I have the mildest form. Some other people are not as lucky as I am.
There is enzyme replacement therapy to help people like me when the disease becomes pronounced. The key to living healthy with Gaucher is having knowledge of and access to all available services.
My parents knew that I had this disease even before I was born. They learned all they could so that I would be monitored and receive excellent care. In order to support the Gaucher population as a whole, the National Gaucher Foundation was created by a small group of families in 1984 to help develop treatments and a cure for Gaucher. They believed that patients should have more information and support in understanding the disease and finding new ways to treat it.
My goal, in honor of my Bar Mitzvah is to support the National Gaucher Foundation. The NGF is an independent nonprofit dedicated to serving U.S. patients with Gaucher disease and their families. They provide financial support, educational programming, patient services, and collaboration with medical professionals.
Thanks to the NGF Gaucher patients can live better lives. Thanks to everyone who decides to donate. Every dollar counts! Those who are getting treated and educated are very grateful for your generosity.