For Nick and Kim Driscoll, the fight to find a cure for Castleman’s Disease is personal.
Their daughter, Elyse, was a vibrant, loving, smart, caring 13-year old who lost her life to the disease two years ago. For the second year, they will host “ELYSESTRONG Roaring 4 Cure Motorcycle Ride,” seeking to raise awareness of the disease and find a cure.
The Driscoll family is working with two organizations, CDCN (Castleman’s Disease Collaborative Network) and CARE (Castleman’s Awareness & Research Effort). The motorcycle ride will be held Saturday, July 23, beginning at The Moose Lodge, 67 Fitchburg Street, Marlborough. Registration begins at 9:30 and “kickstands up” at 11 a.m.
The route goes around the Wachusett Reservoir. It begins and ends at the Moose Lodge; the 45 mile loop is expected to take about an hour and fifteen minutes and goes through communities including Hudson, Berlin, Clinton, Lancaster, Sterling, and Stow. In 2015, there were 31 bikes participating, and the event raised $4000 for Castleman’s Research. This year, the family is hoping to do even more. This full-day event includes the ride, as well as raffles, auctions, and prizes. A $25 donation includes the chance to take a ride, as well as enjoy a breakfast, and lunch later in the day.
The Driscolls recall their daughter’s brave struggle against a disease about which little was known. They have come to know other families affected by the disease, and Kim has worked tirelessly with doctors to help link families who are battling similarly. Through their efforts, the CDCN (Castleman’s Disease Collaborative Network) has brought families together. Nick recalls that, in December, they brought everyone who could travel to Florida, providing children with Castleman’s a chance to see Disney World.
“Everyone thought their family was afflicted by a rare disease,” he said, adding, “Working together, we saw that it was not as a rare as we thought.”
Castleman’s Disease is a group of rare and poorly-understood hyper inflammatory disorders that occur in people of all ages, causing lymph node enlargement , multi organ dysfunction as well as organ failure. There are different subtypes of the disease, and many patients have symptoms similar to those of lymphoma. It is as common as ALH (Lou Gehrig’s Syndrome, and considered as deadly as cancer.
In addition to seeking riders and participants, the event offers sponsorship opportunities, with sponsors’ names being mentioned throughout the event. For additional information, please visitwww.elysestrong.com. Also, please visit Facebook https://www.facebook.com/
