I’m
honored to be running the 2022 New York City Marathon with the Running for Rare
Diseases Team supporting the National Organization of Rare Disorders (NORD) and
National Institute of Health’s Undiagnosed Diseases Network. It is my aim to bring
greater awareness to rare diseases and raise funds for an
incredible organization that drives research and advocacy for the
undiagnosed.
A
rare disease is defined as any disease, disorder or illness affecting fewer
than 200,000 people in the U.S. With so few diagnosed research, and
subsequently, treatments are unavailable or limited to experimental studies. More
than 90% of rare diseases do NOT have an FDA approved treatment.
Despite
the moniker “rare” I’ve come to have several very close family and friends who
have been diagnosed with rare diseases, including multiple forms of cancer and
vascular disorders. Notably, Pheochromocytoma, a cancer of the adrenal gland,
is a disease where patients experience “storms” due to excess production of
stress hormones, heart palpitations, sweating, etc. which are often mistaken as
panic attacks and stress. We are extremely grateful to live in a region where
we can easily access multiple NORD Centers of Excellence, including The
Hospital of University of Pennsylvania. With the funds raised by NORD's
Running for Rare team, more individuals can access the resources needed to
shorten the diagnostic odyssey.
In
the rare disease community patients are known as Zebras because doctors are
often taught 'when you hear hoofbeats, think horses not zebras,' meaning
a doctor should first think “common things are common” and not of
rare disorders. With that in mind, I’m running for all of the
Zebras in my life – those currently diagnosed and filled with uncertainty about
the road ahead, those recovering thanks to the power of medicine and research
and all of the individuals I’ve come to know through the NORD Running group.
Please don't hesitate to reach out if you have any questions - on the programs
this fundraiser supports, a rare disease or anything else! Thank you in advance
for your consideration of this important cause.
