Jeff’s Half Ironman SDS Fundraiser

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  • Event Status – Ended (June 23rd, 2013)
  • Goal Amount – $10,000
  • Amount Raised – $2,900

Original Description

Jeff Kohn is the father of a 5 year old son, Quinlan, with a life threatening bone marrow failure syndrome called Shwachman Diamond Syndrome (SDS). SDS is the third most common inherited bone marrow failure disease and second most common cause of inherited pancreatic insufficiency.

Jeff is raising $10,000 to support a cure of SDS by racing in the Rev3 Williamsburg Half Ironman on June 23rd. A half ironman is a 1.2 mile swim, 56 mile bike, and 13.1 mile run.

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Affiliations

Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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