Jacob was born on December 27, 2001. At the age of four months, Jacob was diagnosed with SMA. He was never able to roll over, sit up or crawl. By the age of six months, he had lost the ability to swallow. On October 1, 2002, Jacob’s respiratory muscles had grown too weak to sustain him, and he died. He was nine months old.
SMA is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. SMA is the number one genetic killer of children under the age of two. One in every 40 people, eight million people in the US, carries the gene that causes the disease. There is currently no treatment or cure for SMA.
In nine years, The Jacob Isaac Rappoport Foundation has raised nearly $875,000, which has made a tremendous impact on the SMA community. The Foundation has supported many diverse programs, including:
-Care Packages for newly diagnosed SMA families.
-Multiple basic research awards which led to breakthrough discoveries on the genetic cause of SMA.
-New drug discovery programs, including for the first ever new SMA drug program to be approved to begin clinical trials.
Shaina Rappoport stated, “In 2001, six weeks after Jacob was diagnosed, we attended our first Families of SMA conference, with a five month old Jacob in tow. We asked ourselves how it was possible to be part of this. But, when we were greeted with open arms and hearts, we knew we were in the right place. During the conference, someone announced a $100,000 donation to SMA research. At that moment, we knew we wanted to be involved in the fundraising efforts for such a meaningful cause and amazing organization. So far this year we are right on track. If we're able to reach our goal, our total cumulative fundraising would hit $1 Million!”
The Jacob Isaac Rappoport Foundation is currently helping support the Families of SMA research goal to fund 2 new SMA drug development programs to accelerate our path to a treatment and cure.
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Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:
- Funding and advancing a comprehensive research program
- Supporting SMA families through networking, information and services
- Improving care for all SMA patients