The Foundation was created in memory of our son, whose life was claimed by Spinal Muscular Atrophy. Since our inception in October 2002, we have raised over $1.1 million. He was sent home from the hospital with a clean bill of health. At the age of four months, Jacob was diagnosed with SMA, Type 1. He was never able to roll over, sit up or crawl. By the age of six months, he had lost the ability t
o swallow. On October 1, 2002, Jacob's respiratory muscles had grown too weak to sustain him, and he died. He was nine months and four days old. We miss him every minute of each day. After Jacob’s death, we knew that we could not stand by and watch other babies die the same way Jacob did. We founded The Jacob Isaac Rappoport Foundation, which provides funding for basic research and drug discovery programs; sponsors the Families of SMA (FSMA) Annual Conference; enables FSMA to send care packages of appropriate toys to EVERY newly diagnosed Type 1 baby; and funds unique programming and childcare at the FSMA conference. We also host a luncheon for Type 1 families at the conference, and have provided countless hours of emotional support to families nationwide. We are always amazed at how our Jacob, whose life was so brief, continues to touch so many people. We are making a difference and we know that Jacob must be proud!
