In 2011, Aidan Jack Seeger was a spirited six-year-old Brooklyn boy who developed vision and concentration problems. His parents thought he just needed glasses. He was misdiagnosed several times. Eventually, doctors figured out Aidan had ALD (adrenoleukodystrophy), a mysterious and deadly brain disease. His sight went entirely, followed by his ability to walk and talk. Then, just 11 months after diagnosis, he was gone. The worst part? If the disease had been caught early, Aidan could still be alive and well today.
Today, Aidan’s parents Elisa and Bobby Seeger continue to run their custom motorcycle shop in Brooklyn, NY and raise Aidan's baby sister Sienna. But they have made it their life’s purpose to save American children from ALD. This disease afflicts 1 in 17,000 people, mostly boys and men, silently ravaging their central nervous systems. Results include blindness, deafness, seizures, progressive dementia – leading to permanent paralysis or death. But there’s a solution: newborn screening of ALD. If the disease is caught before the onset of symptoms, it can be treated and, in some cases, entirely reversed. Through the Seegers’ tireless commitment, newborn screening for ALD became law in New York State.
They are now fighting to pass “Aidan’s Law” (S. 2641 & H.R. 4692), which would require ALD screening in all 50 states. The procedure costs less than $2.50 per infant, and the price will go down as it is adopted in more states. We have no excuse not to pass this bill.
Screening of ALD requires a single drop of blood taken from a baby’s heel at birth, and costs less than a cup of coffee. (Read Aidan’s full story).
Not long after Aidan was diagnosed with ALD in 2011 street artist Shepard Fairey paid a visit to Indian Larry, the custom motorcycle shop his parents operate in Brooklyn, New York. (Fairey was at the shop to paint the latest of his iconic “Obey” murals on an outside wall.) No one remembers, exactly, how it started. But while Fairey was working on the mural - while Brooklynites with iPhones were in observance - the latest twist on Fairey’s street art meme emerged: Aidan Has A Posse.
Motorcycle groups, school kids, moms, nurses, teachers, musicians, the art world and celebrities showed support for Aidan by sharing photos of themselves with “Aidan Has A Posse” signs on social media and using the hashtag #aidanhasaposse. The photos and posts were creative and impassioned.
A fundraising website was published to help pay for Aidan’s skyrocketing medical bills (totaling more than $4 million): www.aidanhasaposse.org. Billboards went up promoting the website in Brooklyn and Manhattan. Tee-shirts, stickers, caps and wristbands featuring the meme were sold at fundraising events and Indian Larry’s merch shop.
Aidan’s Posse is alive and well - and growing. It includes Shepard Fairey, Susan Sarandon, Ewan McGregor, Ken Jeong, Ed Asner, Tyson Beckford, Shane McMahon, Stephanie McMahon, Mark Feuerstein, Zoe Kravitz and The Blue Man Group.
What about you?
The Aidan Jack Seeger Foundation was established in 2012 to address the need for information about adrenoleukodystrophy (ALD) and provide financial assistance to families coping with the cost of care. AJSF also promotes newborn screening of ALD (Aidan’s Law). AJSF is a community supporting and encouraging families of those afflicted by ALD as they struggle to cope with the demands of the disease by:
Providing financial support to families of children with ALD
Funding research efforts that will identify new treatments, therapies and ultimately, a cure for ALD
Raising awareness of ALD and increasing the probability of early detection and treatment
Advocating for newborn screening of ALD in 50 U.S. states (Aidan’s Law)
Aidan’s family has been blessed with support from all over the world. Aidan’s Facebook group is reaching 20,000 members who’ve journeyed with Aidan’s family, the Seegers. The community’s social media posts, letters, cards and gifts have made the Seeger’s days brighter.
In serving families coping with ALD, AJSF pays tribute to Aidan. He suffered enormously and showed them the meaning of kindness, hope and LOVE. The foundation’s mission is to save future American boys and their families from this unimaginable (and needless) suffering.