Fifth Annual Aidan’s Ride seeks to save lives with universal newborn screening

Eagle rides along in support of Aidan’s Posse

June 25, 2018 By Andy Katz Special to the Brooklyn Daily Eagle

A rest stop midway across the Brooklyn Bridge. Eagle photos by Andy Katz

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“Watch out for potholes,” declared Paul Marcel of NYC EMS over the mobile PA, “because they will swallow you whole!”

Marcel’s audience was 150 motorcyclists revving their machines in the late June sun, waiting to hear the rest of his last minute instructions before embarking on the Fifth Annual Aidan’s Ride.

Sponsored by one of Brooklyn’s premier custom motorcycle shops, Indian Larry Motorcycles, and the Aidan Jack Seeger Foundation, the rides take place all over the United States, but the heart of Aidan’s Posse is right here on North 15th Street.

Aidan Jack Seeger was born in 2007 in Brooklyn. His parents, Elisa DeBellis Seeger and Bobby Seeger own and operate Indian Larry Motorcycles, having taken up the gauntlet after the sudden death of the shop’s namesake and guiding spirit, Larry DeSmedt in 2004.

Aidan was a strikingly handsome boy, with dirty blond hair and piercing blue eyes. He lived the life of a normal school age boy until age six, when he developed neurological symptoms. After several misdiagnoses, an MRI revealed the presence of a rare and deadly genetic disease, adrenoleukodystrophy, or ALD.

ALD, publicized in the popular movie, “Lorenzo’s Oil,” is treatable if detected early enough, but it was already too late for Aidan. He died a year later at age seven.

Low 12 Riders are a Masonic bike club, and have participated in previous Aidan’s Posse rides. From left, Frank and Donna Ryan, Bill and Valerie Montzouros

Determined that Aidan’s life and death not be in vain, the Seegers created the Aidan Jack Seeger Foundation to call for universal newborn screening for ALD, which is accomplished via blood samples collected on specialized filter paper.

“Nebraska is coming on board in January,” said Elisa Seeger, “so that will be 10 states [that mandate newborn screening for ALD]. When you’re having a child you don’t think about these things!”

Seeger went on to describe another ALD family whose child was saved because his mother, a nurse at Sloan-Kettering Medical Center in New York, had her baby there. He tested positive for the ALD marker, prompting his elder brother to be tested as well.

Because the family lives in New Jersey, Seeger concluded, they might not have discovered the presence of ALD until it was too late. New York State, however, does mandate newborn testing for ALD, thanks to Aidan’s Law, passed in 2012.

Now Elisa Seeger wants to bring Aidan’s Law to all 50 states.

Post ride supporters gather for group picture. The boy in the wheelchair is Brandon Rojas, age 10 diagnosed with ALD 3 years earlier.

Jeremy Meady brought his sons, Brody and Finn, all the way from Monroe, Connecticut, along with father-in-law, Harvey Miller, to support Aidan’s Ride because his younger son, Brody, age three, tested positive for ALD. Connecticut adopted ALD screening in 2015.

“We’re getting him checked regularly now,” Meady said. “They’re able to intervene at a much younger age now. So far, he’s good.”

Standing out from the crowd of two-wheelers, Adam Stringer and his daughter, Abigail, arrived in a Morgan 3 Wheeler. Abigail, now in her teens, attended school with Aidan Seeger.

“I was one of his many girlfriends,” she recalled with a fond smile. After Aidan died, Abigail had the opportunity to perform a “tzedakah,” or charity function, with her Sunday school. She chose to support the foundation.

Some riders, of course, had no personal experience with ALD or newborn testing. They came for the ride.

Co-owner of Indian Larry Motorcycles, Bobby Seeger, is Aidan’s father and co-founder of the Aidan Jack Seeger Foundation

“It’s a good cause, and it sounds like a great ride,” said first-time participant Bruce Parker, wiping down his immaculate Indian Chieftain.

“I used to come here when I was a kid, when Larry had the shop,” said Amy Broder, on hand with her daughter, Sophie Weinberger. “I’m a Greenpoint veteran,” she explained with a laugh.

After consultation with the NYPD Highway Patrol motor officers who would lead the ride, kickstands rose, and the roar of motorcycles quickly filled the narrow streets of North Brooklyn.

Officers and ride marshals raced ahead of the pack to carve out a course that crossed the Brooklyn Bridge, filled the Brooklyn Battery Tunnel, and circumnavigated the periphery of Brooklyn and Queens, before cutting back into Manhattan.

A brief, celebratory pause midway across the Brooklyn Bridge afforded everyone a chance to stretch, rev their engines and grab some photos before swinging through Lower Manhattan, onto the Manhattan Bridge and back to North 15th Street and Indian Larry Motorcycles.

Burgers, hot dogs and icy cold water awaited. EMS Officer Marcel read out winning raffle ticket numbers—prizes included a new crash helmet and prime, local vintage wines.

According to the ALD Foundation the incidence of ALD is thought to be approximately 1:18,000 births. Caused by a mutation in the X chromosome, the disease gradually strips away the neuron’s protective myelin sheath, leading to disability and death. Although it appears equally in both sexes, boys, lacking a corresponding X chromosome, are affected earlier in life. Early diagnosis and treatment are essential and lifesaving.