Aidan Jack Seeger was a curly-headed, blonde boy with incredible blue eyes. At age seven he succumbed to a rare disease called adrenoleukodystrophy (ALD)—only 11 months after his diagnosis.
Had he been screened for the disease as an infant, he might have survived. After his death, his mom, Elisa Seeger began leading the charge to make ALD part of the newborn screening panel around the world.
ALD is a metabolic disorder that affects one in 18,000 people, predominately boys and men. It typically becomes evident between the ages of four and 10, according to the website stopald.org.
In 2013, Aidan’s mom saw the first of what she hopes will be many small victories to help save other children born with this deadly condition. She was the driving force behind New York being among the first states in the U.S. to pass legislation requiring newborn screening for ALD.
The Aidan Seeger Foundation is a legacy to this life cut short, and it’s making a difference in the lives of future generations in many wonderful and amazing ways.
Aidan must have loved motorcycles (and bikers love a good cause), because each year the foundation benefits from rides held by enthusiasts from New York to California. Among the events this year was the Sturgis Motor Rally this past month, through the Black Hills of SD. Aidan’s Rides will continue throughout the year, the next one scheduled for NJ in October. These rides aim to keep raising awareness and funds for ALD and the early intervention screenings that can save thousands of lives.
