Dear Friends and Family,
Running has been my personal therapy since 2008. Whenever I am stressed or things get tough running helps me attain calmness. This year as I look to run the Boston Marathon I wanted to add a cause to my effort – to raise awareness for Rare Disorders. “Rare disease/disorders is a condition that affects fewer than 200,000 people in the United States”. In addition to fundraising for NORD I will be running on behalf of Tanaya who has been diagnosed CdLS, a rare genetic condition that challenges physical and cognitive development.
I am a part of the Genzyme Marathon Team and will be running the Boston Marathon for the National Organization for Rare Disorders (NORD). This year, I am excited to report that the team is representing 10 different patient communities through our runner/patient partnership program. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. Our motto is ‘Alone We are Rare, Together We are Strong”.
One of our patient partners, Rebecca wrote in a letter “this is what we need more of in life. inclusion. compassion. sensitivity to the people that comprise our world ...the fortunate and the unfortunate. the willingness to take each other in. to believe in each other. to lift each other up.” This is what the runner/patient partnership is all about.
I know these are difficult times but please know that any amount of donation, however small is very significant and will be greatly appreciated.
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 $125,000 over the four years running for NORD. Please help us make this year just as successful. No donation is too small. We appreciate your support.
To make a donation, please click on donation link at the top of the page.
To learn more about the Genzyme Marathon Team, Go Directly to Genzyme Marathon Team Website (http://runningforrarediseases.org/).
Thanks in advance
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!