Join us for a 2 mile fun run/walk.
Followed by food & family entertainment!
Help us find a cure for Spinal Muscular Atrophy, the leading genetic killer of infants and toddlers. To attend the event or fundraise, please click the "Register or Fundraise" button to the right.
To make an online donation, please click the "Donate" button to the right.
Meet Jacob Rappoport
Jacob was born on December 27, 2001. He was sent home from the hospital with a clean bill of health. 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. We miss him every minute of each day. Sadly, Jacob’s story is just ONE of many. We had never heard of SMA, but now we have pledged our lives to fighting this horrific disease. We have chosen to do this to honor our son’s memory.
What is Spinal Muscular Atrophy?
SMA is a group of inherited and often fatal diseases 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. Two children in the United States are born with SMA each day. One in every 40 people carries the gene that causes SMA. That is seven million Americans. SMA is an equal opportunity killer; SMA has no gender or racial preferences. There is currently no cure for SMA.
What is the Jacob Isaac Rappoport Foundation?
After Jacob's death, we knew that we could not stand by and watch other babies die the same way Jacob did. We formed The Jacob Isaac Rappoport Foundation (a 501(c)(3) organization), which funds SMA research and programs that support affected families. In seven years, we have raised nearly $675,000; sent dinner, cleaning services or packages of toys to hundreds of SMA families; provided scholarships to SMA conferences; hosted luncheons for affected families; and have spent countless hours lending emotional support to parents of newly diagnosed babies.
