BENEFITING: National Organization for Rare Disorders, Inc.
EVENT DATE: Nov 05, 2017
DAYS TO GO: 130
I was diagnosed with a rare disease called Primary Ciliary Dyskinesia (PCD) when I was 17. PCD mostly affects my lungs and sinuses. I have 40% lung capacity and I have to wear oxygen when I race. I'm not fast, but I'm determined. I have participated in multiple races in different states and two countries to help raise awareness of rare diseases, lung diseases, PCD and oxygen needs. New York will be my first marathon.
My parents started taking me to specialists when I was three. They also took my sister, who is four years younger and also has PCD (and had a double lung transplant in 2014). As many with rare diseases know, it can take a long time to get the proper diagnosis and misdiagnosis is all too common. There are only about 2,000 PCD diagnosis in north america. About half of those with PCD have partial or total organ reversal. For example, their heart might be on the right side instead of the left.
National Organization for Rare Disorders, Inc. wrote - For the tenth 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.