On October 7th 2018, I will be running Chicago Marathon, one of the world marathon majors. This will be my second world marathon major after Boston. I am selected via a lottery process and do not necessarily require a fundraising to run this marathon. Via Running for Rare program, I would like to show my continued support for rare community patient partners and for NORD (National Organization for Rare Disorders).
I will be running this marathon for Andrew (11 years old) and raise awareness about Cyclic Vomiting Syndrome or CVS. Andrew has come a long way battling CVS. Andrew, just like every other kid, likes to have fun. CVS causes recurrent episodes of nausea, vomiting, and tiredness (lethargy) lasting an hour to 10 days. Diagnosed most often in young children, but it can affect people of any age. Triggered by a variety of factors, most common triggers are emotional excitement and infections. The episodes of vomiting will lead to dangerous loss of fluids (dehydration). Most people with CVS have normal intelligence, although some affected people have developmental delay or intellectual disability. Autism spectrum disorders, which affect communication and social interaction, have also been associated with CVS. The treatment is almost always for symptomatic relief in most cases and better management of trigger episodes. Please read more about CVS here.
For the eleventh 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!
