Thank you friends and family for visiting my fundraising page and learning a little more about our cause.
Growing up in Hopkinton has always been an exciting day on Marathon Monday. Every year I would watch the runners in such admiration, and always leave stating that SOMEDAY I will do the Boston Marathon. Well, this will be my day! Alongside 15 other Genzyme employees and 1 patient partner from last year, I will embark a grueling 26.2 miles to complete the 117th Boston Marathon. Along the way, it is my goal to raise awareness and funds for those whose lives are impacted by rare disorders. The National Organization of Rare Disorders (NORD) is a charity that embodies Genzyme’s research and overall mission of supporting those patients afflicted with rare diseases for which there is an unmet need for treatment and support.
I have been fortunate enough to be paired up with my patient partner Ben, a 16 year old boy who has Congenital Hyperinsulinism (HI). HI occurs as a result of over-production of insulin in the pancreas, causing low blood sugar (hypoglycemia). Brain damage can occur if the condition is not recognized or if treatment is ineffective in preventing hypoglycemia. Stroke-like symptoms, cerebral palsy and blindness may also be caused by hypoglycemia. Read more about Ben and his story. http://rarediseases.org/patients-and-families/patient-stories/ben .
Ben’s mom, Julie happens to be the executive director of Congenital Hyperinsulinism International (CHI). After speaking with her over the phone, she mentioned there was a patient in Hopkinton that would like to be partnered up with a marathon runner for NORD. Coincidentally this family has children that go to school with my children. Not only did I gain an additional patient partner, but a new bond with the family. Christopher (8 years old) has joined my team to advocate his hurdles with HI. Read more about Christpher: http://runningforrarediseases.org/
NORD is the consumer organization that advocated for enactment of the Orphan Drug Act of 1983. They monitor implementation of the law, especially encouraging research and development of new treatments for rare “orphan” diseases. Their most important mission is to assure that research on rare diseases is widespread and productive, leading to medicines, biologics, devices and diagnostics that will help patients with rare diseases. They support the incentives in law that stimulates companies to do orphan drug research. They want safe and effective products to get to market as quickly as possible. This legislation paved the way for pioneering companies like Genzyme to develop innovative products to treat very rare diseases. There are now hundreds of companies researching and developing therapies for rare diseases.
The Genzyme team has raised more than $180,000 over the five years running for NORD. Please help us make this year just as successful. No donation is too small. We appreciate your support. I truly appreciate you taking the time to read this and hope you have learned a little more.
To make a donation, please click on donation link at the top of the page. All donations to NORD are tax deductible.
To learn more about the Genzyme Marathon Team, Go Directly to Genzyme Marathon Team Website (http://runningforrarediseases.org/).