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Roar emotion: Bikers raise awareness for deadly brain disease

for Brooklyn Paper
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Riding a cause: Motorcyclist Woody Pierre said Windsor Terrace parents Elisa and Bobby Seegers’ fund-raising ride created a camaraderie of hope for people fighting to make Aidan’s Law applicable in all states so all babies are screened for a deadly brain disease.
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Making a difference: Nicholas and Matthew Hunter prepare for Aidan’s Ride with Elisa Seeger. Matthew is the first boy diagnosed with the rare disease since New York state passed Aidan’s Law in 2013.
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Strength and awareness in numbers: Hundred of motorcyclists gathered to help raise funds and awareness for Aidan’s Law, which could save hundreds of children’s lives if passed in all 50 states.
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Helping out, one by one: Riders Baradiso and Tony Bem show their support for the fight against the deadly brain disease.
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Focus on the ride: Motorcyclists participating in Aidan’s Ride said their focus was on riding the Williamsburg-to-Long-Island ride, but the united front left an impact on people who hadn’t previously heard of the brain disease.

These bikers are blazing a trail to save lives.

Motorcyclists rode from Greenpoint to Long Island and back again on June 11 to raise awareness for adrenoleuk­odystrophy — a rare, deadly brain disorder that took the life of a young Brooklyn boy in 2012 — and the sight of hundreds of hogs roaring through the streets really caught people’s attention, according to one participant.

“You see a group of bikes and it grows a concern and some sort of awareness to what the ride is about,” said Woody Pierre, a friend of Elisa and Bobby Seeger, parents of the late Aidan Jack Seeger.

The Seegers, who own Greenpoint custom bike shop Indian Larry Motorcycles, founded the Aidan Jack Seeger Foundation and annual Aidan’s Ride to raise money to treat and cure the disease that affects one in 17,000 people — mostly boys and men — and support affected families.

They also successfully convinced state lawmakers to pass “Aidan’s Law” in March 2013, which mandates that all newborns are screened for adrenoleuk­odystrophy — the disease depicted in the 1992 film “Lorenzo’s Oil.”

If caught early, doctors can begin treating the disease, which affects the nervous systems, causing blindness, deafness, seizures, dementia, and eventually paralysis or death.

Since the law passed, New York doctors have caught 48 cases, and the Seegers are now pushing politicians nationwide to create similar legislation.

Pierre — who has participated in every Aidan’s Ride — says the event and the foundation have done a great job spreading awareness. He said a stranger approached him when he was wearing a T-shirt that said “Aidan Has a Posse” at an event in Sunset Park, and knew exactly what it was about.

“She knew everything about Aidan an the disease and she wasn’t even a motorist,” he said.

Updated 10:17 pm, July 9, 2018
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