Nonprofit donates funds for research into rare blood disorders
This September, Dew Point Brewery in Yorklyn will sponsor a 5K “Hope on the Horizon” run and walk to benefit the American Partnership for Eosinophilic Disorders (APFED).
According to their website, APFED is a nonprofit organization dedicated to patients and their families coping with a variety of eosinophilic disorders.
The walk was arranged by 28 year old Hockessin resident Shelly Parks, who was diagnosed in June 2017 with Hypereosinophilic Syndrome, or HES, after a year-long sickness and only after doctors eliminated every other possible eosinophilic disorder.
HES is a rare blood disorder that affects the body’s eosinophils, a variety of white blood cell and part of the immune system’s ability to combat allergens.
Without treatment, which is usually a series of glucocorticoids, the condition is terminal.
“It’s hard to find a specialist who focuses on this disease, so I bounced around a lot,” Parks said, adding that she is now a patient at Johns Hopkins in Baltimore.
However, Parks said she is not currently receiving treatment because her insurance company refuses to pay for it.
As a result of the disease, Parks said she has developed numerous allergies because of her body’s inability to fight off allergens.
Having participated in a Maryland “Hope” walk in May that was poorly attended, Parks said she decided to try and host one herself.
“I thought, ‘if I’m not doing it, no one is,’ because no one knows about this disease,” she said. “Dew Point ended up being the perfect place to hold it, and anything to help promote Dew Point, they’re great. And the Hoffman family has been so helpful in setting this up.”
Proceeds from the “Hope on the Horizon” walks benefits research and grants, as well as funding for people who don’t have insurance to get into clinical trials for treatment.
For more information on the walk, visit facebook.com/events/519592238481065. To register, visit eventbrite.com/e/apfed-hope-on-the-horizon-5k-run-walk-delaware-tickets-48486794307.