5K run/walk to raise funds for research into Shwachman Diamond Syndrome, a rare bone marrow failure syndrome that currently affects about 500 people world wide. Monies also raised go toward cord blood research. Family event. music by Hampton Sounds, food, face painting, Sunny the Duck.
This year, we will also be hosting a bone marrow drive to help those with bone marrow failures. The Icla da Silva Foundation, Inc. will be in attendance to answer questions about bone marrow donation.
Dylan Egan Kolar, an active 10 year old living in Sayville, was diagnosed at the age of one with a rare bone marrow failure syndrome called Shwachman Diamond Syndrome. Within his first year, Dylan received eight blood transfusions and was hospitalized a number of times for infections secondary to bone marrow insufficiency. He is currently doing very well under the guidance of the wonderful doctors of Cohen Children’s Hospital (formerly Schneider's). More research is necessary to help Dylan and all the other children struggling with Bone Marrow Failure Syndromes.
