When John and Cathy Engers' youngest son, Jacob, was diagnosed with Duchenne muscular dystrophy at age 5, they didn't know what to do.
After researching the disease, they thought he would live to be 16 or 17.
"Needless to say we were mortified," John Engers said.
Jacob Engers, now 22, defied their expectations.
His father credits it to advancements in treatment.
According to the Muscular Dystrophy Association, more men with the disease are now living into their early 30s, and others into their 50s.
Duchenne muscular dystrophy is the most common childhood form of muscular dystrophy and makes up about half of all cases, according to the National Institute of Public Health. According to the Centers for Disease Control and Prevention, the disease affects one in every 3,500 to 6,000 male births each year in the United States.
In May, Jacob graduated from Edinboro University of Pennsylvania.
And now that John and Cathy Engers have been able to celebrate milestones with their son, they started a foundation, Katie's Bridge to Independence, this summer to help make life easier for families of teens with neuromuscular diseases.
In years past, the Engers would hold fundraisers for the Muscular Dystrophy Association. But as they noticed the nonprofit shift toward doing research, they wanted to find another way to directly impact families.
The goal of Katie's Bridge to Independence is to help young adults with neuromuscular diseases become more independent. The nonprofit intends to raise money for academic scholarships and help adapt homes.
"Jacob was fortunate enough to go to college, but a lot of those families don't have that opportunity," John Engers said. "A lot of those families don't have the wherewithal to help their kids build ramps or adjust houses."
Stacy Alford, executive director of MDA’s Baltimore office, said many nonprofits start because people see gaps where there may be a need. The MDA has never focused on scholarships, she said.
“What she’s doing is fantastic,” she said of Cathy Engers’ efforts.
The foundation is named after Katie McGuire, the former patient service director for the Muscular Dystrophy Association in Maryland, who died in January 2014. The foundation is something the Engers discussed with McGuire before she died, and it was one of her wishes for young adults with neuromuscular diseases to be able to be active.
One of the ways the Engers have raised money for neuromuscular disease research in the past has been an annual Home-Brew-Fest at their Oakdale Avenue home, in which John Engers and friends brew beer at his home and let the public try them. This year, in the fourth year of the event, the money raised will go toward the Engers' foundation.
John Engers started home brewing at 18, though in the last 12 years he has picked up the hobby a bit more. This time of year, he gets busy, as he brewed about 20 five-gallon batches of beer in the last month at his home.
Hops grow on a wall against his driveway and he'll do brewing outside in five-gallon batches. The beer ferments in a basement room.
This year's beers include a chocolate raspberry porter, an orange blossom cream ale and a blackberry ale.
"It's even got a purple tinge," he said about the blackberry ale. "It can be a Ravens beer."
In the first year of the event, $3,000 was raised. This year, the Engers hope to raise $8,000 in donations and a larger silent auction than in prior years.
A donation of $30 includes four beer tickets, access to a silent auction, pit beef and light fare. Attendees must be 21 to enter.
IF YOU GO
When: 1-6 p.m. Saturday, Sept. 10
Where: 115 Oakdale Ave., Catonsville
Cost: $30 donation