When the word “biker” is mentioned, images of tattooed, bearded, leather clad large gentlemen pop into mind…or possibly SOA cast members if you’re into that sort of thing. Either way, a lot of times “bikers” aren’t cast in the most flattering of lights.
The reality is that the people I know that love motorcycles that are labeled “bikers” are some of the most caring and generous people I know. And that was again apparent this year at Daytona Bike Week. On a warm Thursday night in Daytona, bikers gathered in front of the stage at the Cackleberry Campground to raise money for a very worthy cause. This particular fundraiser was going to require a certain amount of self-sacrifice by a few very selfless and giving “bikers.”
So why were we there? We were all gathered to raise money for the Aidan Jack Seeger Foundation. The foundation was started in 2012 by Bobby and Elisa Seeger (yes, that Bobby from Indian Larry Motorcycles) after their son was diagnosed with ALD and eventually passed from the disease just 11 months after his diagnosis.
The foundation is a non-profit 501(c) 3 organization that is run completely by volunteers with every donation directly benefiting their mission. That mission is to address the need for information and newborn screening for Adrenoleukodystrophy (ALD) as well as to support and encourage the families that have been afflicted as they struggle to endure with the demands of the disease.
In short, ALD is a deadly genetic disease that affects 1 in 17,000 people, most of whom are boys or men. ALD usually manifests in boys between the ages of 4-10, but by the time the symptoms are noticed it is usually too late for treatment. They key is early detection and there is testing available.
The problem is that states are not using it. Elisa Seeger took it upon herself to get this added to the newborn screening panel in New York state (the Seeger’s home state). And due to her relentless efforts, “Aidan’s Law” was signed on March 29, 2013, exactly 11 months after Aidan had passed. As of December 31, 2014, there have been 15 babies diagnosed with ALD, giving them the best possible chance for treatment and a normal life.
And that brings us back to why these hairy bikers were gathered on this humid night in Florida. They were about to contribute to this very worthy cause by giving up a little piece (or pieces) of themselves. This was a BEARD OFF!
As “The Mayor of Fun” Bean’re grabbed the mic and began to whip the crowd into a frenzy, the bearded ones began to emerge from the crowd. And the crowd responded with cash! It was an all-out bidding war for facial hair. Many of the notables who sacrificed their beloved beards were well-known artist and all around good human Darren McKeag, along with Bobby Seeger himself! As the beards hit the ground the cash flowed in and the “bikers” once again showed their true colors in support of some good people with a great cause.
If you would like to contribute or learn more about ALD or the Aidan Jack Seeger Foundation, please visit www.aidanhasaposse.org/ or look for local events to benefit ALD and the foundation by searching social media outlets like Instagram and Facebook for the hashtag #AidanHasAPosse.