PITTSBURGH - Dustin and Jeremy Helm have a brotherly bond that knows no limits.
They grew up in Murrysville and were born not even a year apart.
They did everything together, but one major difference would ultimately tear them apart.
"It started with crutches and went to a chair and to the point where your body is unable to move," said Dustin Helm.
Helm's little brother, Jeremy, had Duchenne muscular dystrophy, a devastating muscle disease for which there is no cure.
Jeremy was a poster child for the MDA in the 1990s, helping to raise awareness and funds for MDA.
“And yet to see the smile on his face, to know what he did to try and inspire other families to continue to donate. It's something I never want to give up. I never forget about," said Dustin.
Jeremy died in 1994 at only 22.
Now it is Dustin who is the tireless ambassador for the MDA.
Channel 11’s Peggy Finnegan caught up with him at his annual fundraiser.
"When you are out here walking the greens, playing with your friends, do you feel his presence?” she asked.
“Always," he immediately said.
This year marks the 20th anniversary of the golf event he created in memory of his brother and Helm is closing in on half a million dollars in donations.
"He's definitely a superstar in raising money," said MDA executive director Debbie Haseleu.
She had high praise for homegrown fundraising.
“I think Pittsburghers are unique,” she said. “I'm a Pittsburgher born and raised. I think we pull together. We help one another."
Helm said he's not stopping until there's a cure.
He's doing it for Jeremy.
"He's the leader of this whole event. He's who drives me every day."