I am thrilled to be doing the New York marathon again. And this time I'm going to finish it! In 2017 I was honored to be a charity participant with Running for Rare. Due to health issues, thanks to my rare disease, Primary Ciliary Dyskinesia (PCD), I was unable to finish the race.
This year I won the marathon lottery and even though I have a guarantted entry I am excited to partner with Running for Rare and fundraise. And this year I plan on finishing and finishing strong.
My lung capacity is around 38%. In order to race I have to wear a portable oxygen concentrator (POC) to help me breathe. The POC weighs 6 pounds and lasts a little under 4 hours. I hope to finish in under 10 hours which means I'll need two extra batteries, so 4 additional pounds.
As a disabled athlete though I am allowed a guide to help so my husband, Ed, will be walking with me and carrying the additional 4 pounds for me. Ed has walked two half marathons with me in the past.
Any donation is appreciated. Everyone deserves a diagnosis and a cure.
For the 12th 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. 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.