We invite you to run or walk in the
11th Annual 5K Shwachman Diamond Dash
Saturday June 14, 2014 9AM
Interested in becoming a corporate sponsor for the 2014 race? Please contact us at firstname.lastname@example.org.
View all 2013 finisher videos here at Sayville Running Co's YouTube page
Dylan Egan Kolar, an active 13 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.
Read a special Thank-You from Jennifer Kolar, Dylan's mom.
Entire proceeds to benefit Shwachman-Diamond Project
Thank you so much for being here. For me it is that time of year again. That time of year where I look around and see I am not alone. That Dylan, is not alone. I look around and see all the time & effort of everyone here & am reminded that we are lucky. [...]
Dylan Egan Kolar, now a lively 11 year old living in Sayville, was diagnosed with Shwachman-Diamond Syndrome (SDS) at the age of one. 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 [...]
DISEASE INFORMATION First described in 1964, Shwachman-Diamond Syndrome is a rare disease which mainly involves the pancreas, bone marrow and skeleton, but other organs may also be affected. Next to Cystic Fibrosis, it is the most common cause of pancreatic insufficiency in children. For that reason, it is sometimes confused with Cystic Fibrosis; but in [...]