Fundraising Goal Hit!!
October 03, 2016
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT DATE: Nov 06, 2016
I'll be running the New York City Marathon in November on behalf of my new friend Tara, who is battling Mast Cell Disorder, caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells are "master regulators" of the immune system. They come from bone marrow and go into all tissues of the body. Tara has a beautiful family and I am looking forward to beginning this life-time friendship with her!
I also will be thinking of my dear friend Heather Von St. James, who was diagnosed with mesothelioma 10 years ago, my grandmother who is currently battling Alzheimer's disease and all of the pALS(patients living with ALS) who I've had the pleasure of working alongside during my time at the ALS Association during the NYC Marathon. I am looking forward to running 26.2 miles through the most gorgeous city and raising awareness for all rare diseases!
For the ninth consecutive year, patients and advocates will run as members of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services.
Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children. On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH).
Donations in support of this campaign will be tax-deductible to the extent permitted by law. For eight consecutive years, NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities.
The individuals and families helped by NORD often have nowhere else to turn for assistance. Your support of this campaign is very important to them.