Coast to the Cure, a cycling race to raise money for neurofibromatosis research, is returning to Stage Fort Park on September 10 for its 11th annual event. The event includes 100-mile, 50-mile, and 25-mile routes that wind through some of the most scenic areas of coastal Massachusetts before returning to Gloucester, where a live DJ, a beer garden sponsored by Harpoon, and a post-ride lunch will await.
“We’ve got a beautiful spot right overlooking the water,” says Sharon Klein, executive director of Neurofibromatosis Northeast, the Burlington-based nonprofit that organizes the event. “It’s very festive when the riders come back.”
Cyclists can register online. Registration is $75 and each participant is asked to raise or donate $200. Riders who raise more than $250 will receive a Coast to the Cure cycle jersey.
Last year 115 riders participated and the event raised $139,000.
Neurofibromatosis, commonly called NF, is a group of genetic disorders that cause tumors to grow on nerve tissues. The tumors are generally benign, but can become malignant. The disease can also cause hearing loss, learning impairment, heart and blood vessel (cardiovascular) problems, loss of vision, and severe pain.
It is more common than disorders like cystic fibrosis and muscular dystrophy, but far fewer people have heard of it, Klein says, perhaps because it can appear with such a wide range of symptoms and severity.
“It’s hard to diagnose,” Klein says. “There’s no case that looks exactly like another.”
Despite the reach of the disease, treatment has generally consisted of surgery and medications to relieve symptoms and pain. There is only one drug available specifically to treat NF: In 2020, The U.S. Food and Drug Administration approved a new medication, Koselugo, for use in children with a particular type of the disease. This approval, Klein says, gives reason to hope that more drug developers will see the potential in looking for NF drugs.
“We’ll start to see more therapies come down the pike,” Klein says. “It’s a very exciting time for research in this disease.”
For more information about Neurofibromatosis Northeast or to donate, visit nfnortheast.org.