Hello Friends and Family,
As you may know, I work for a biotech firm called Genzyme, which specializes in researching, developing, and manufacturing treatments for rare diseases. Genzyme's products are focused on rare genetic diseases, multiple sclerosis, cardiovascular disease, and endocrinology. You can learn more about Genzyme at www.genzyme.com.
This year, I am joining a group of runners from Genzyme in a challenge to run the Boston Marathon on April 16th, 2012 on behalf of the National Organization for Rare Disorders (NORD). The Genzyme Boston Marathon team has commited to supporting NORD by helping raise awareness of rare diseases and through fundraising to help support its mission. Please visit http://runningforrarediseases.org for more information.
What is NORD?
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
What is A Rare Disorder?
Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.
What are NORD's Sources of Funding?
NORD is a non-profit organization (TAX ID 13-3223946). Its primary sources of funding include grants and contracts, contributions, and an annual fund-raising event. Ninety-five cents of every donated dollar go directly to patient/family services.
How are NORD's Funds Used?
NORD's funds support numerous programs and services. NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs.
Patient Partner (Morgan - the boy in the photo):
As part of the Genzyme-NORD relationship, each member of the Genzyme team is paired with a "patient partner". My patient partner is a 7 year old boy named Morgan. That's him in the picture with his sister and mother. Morgan was diagnosed at a young age with a rare immunological skin disease called Mastocytosis. Mastocytosis produces large lesions and intense itching and currently has no cure. Morgan and his mother Nicole deal with daily life disruptions, frequent hospital visits, and a lot of unknowns and uncertainty as a result of this rare disease. Over the course of my training, I am getting to know Morgan and Nicole and their story of how a rare disease impacts their life.
The Genzyme team has raised more than $125,000 over the past four years running for NORD. It is both a privilege and an honor for me to run on this year’s Genzyme team. I have personally committed to raising a minimum of $2,500 as a participant on the team in support of NORD. Please help support us and NORD. No donation is too small and we appreciate each contribution.
Donating through this website is simple, fast, and completely secure. It is also the most efficient way to support my fundraising efforts.
I thank you in advance for any support you are able to provide.