BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2016 Boston Marathon
April 18, 2016 I will run the Boston Marathon in honor of Cassandra “Cassie” Samborski (January 7, 1994 – December 9, 2015 ~ Niemann-Pick Disease Type B), who courageously fought the NPB battle for 21 years. Cassie was my hero, the same age as my youngest daughter, and one of the toughest, happiest people I have met.
I hope to raise awareness by being the first person with ultra-rare Niemann-Pick Type B to run the Boston Marathon. Please help others who, like me, struggle for many years to obtain a diagnosis. Hope for treatment begins with a diagnosis!!!
Cassie’s Dad, Wayne Samborski, shared the following update to the NPD community; “For those of you that did not know Cassie, she was a pioneer of Niemann-Pick type B. Her disease back when first diagnosed was moving very fast and doctors gave her maybe a few years to live. At that time, she was the first person in the USA to undergo a Bone Marrow Transplant for Niemann-Pick type B. After two tries it finally worked. After a test showed she had the missing enzyme and was cured from Niemann-Pick type B. Her heart, liver, lungs and kidney paid a price and did get damaged but she made it 21 years instead of 5 years.” Please visit NNPDF.ORG to learn more about this disease.
National Organization for Rare Disorders, Inc. wrote - Marathon runners and rare disease community members team up to support all 7,000 rare diseases and help undiagnosed patients find answers. The funds raised for NORD will support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.