When Grace Lightcap attended a Parent Project Muscular Dystrophy conference in February, it revved up her mama bear instincts. Ms. Lightcap, whose 20-year-old son, Terence Lightcap, has Duchenne muscular dystrophy, realized that aside from her monthly donations to the advocacy group, she has not done anything lately on a larger scale to raise money for research into the disease.
She decided to hold a community yard sale on Memorial Day weekend to raise money to help speed approval for therapies that could help her son and others with Duchenne.
Terence was diagnosed with the disease when he was 7. He no longer walks, but is able to get around on a motorized scooter. The family has lots of support in Montauk: More than 60 family members live in the hamlet. Some of them have run marathons or participated in other events in his name to raise money for research.
Terence’s mother, who is the Montauk School’s district clerk, attended the February conference with her sister Julia Stavola.
There are several ongoing trials of medications that could help Terence, but they can take three to five years and are sometimes abandoned in the middle, according to one of his doctors. The Parent Project believes the federal Food and Drug Administration could be more responsive to the experiences and preferences of Duchenne families.
“We will not rest until the F.D.A. has all of the tools it needs to accelerate its review of Duchenne therapies so effective treatments can be delivered to our children,” said Pat Furlong, the founding president of the Parent Project, who has lost two sons to the disease and is the driving force behind the group.
“She is an amazing woman,” Ms. Lightcap said, and she inspired her to do more. When a friend mentioned that Joan Lycke was no longer running an annual Memorial Day weekend yard sale to benefit a scholarship fund in her own daughter’s name, Ms. Lightcap asked and received Ms. Lycke’s blessing to take it over.
Now she is looking for donations to make it a success. Those who wish to donate can contact her at the Montauk School or at 327-4248 to arrange for drop-off or pickup.
The yard sale, scheduled for May 24, will include a 50/50 raffle and a refreshment table that should be tantalizing.
Ed Lightcap, Terence’s father, is a longtime chef at Rowdy Hall in East Hampton.