Kevin Swan knows how to throw a party. At his Pirates of the Cureabbean fund raiser last April, he wore a captain's tricorn hat, mingling with mermaids and watching his guests walk the plank. All for a good cause, of course. The soiree raised over $130,000 for amyotrophic lateral sclerosis, often referred to as ALS or Lou Gehrig's disease.
Swan, 38, founded A Life Story Foundation in 2012 after receiving his ALS diagnosis and becoming frustrated with how little is known about the disease. Having previously worked as a communications manager for an IT company in Chicago, Swan turned his sights on philanthropy. So far, the foundation has raised $1.5 million towards research, awareness and education with organizations like the Massachusetts-based ALS Therapy Development Institute.
In the foundation's pioneering first responders course, for example, created in partnership with Manatee Technical College, law enforcement, paramedics and EMTs learn best practices in handling patients who have ALS or other motor neuron diseases. Swan explains that the likeliness that an ALS patient will require emergency assistance is guaranteed, and proper training can be imperative to their well-being in a crisis. He hopes to see the program rolled out nationally.
Swan, married with a child, now uses a ventilator and a motorized wheelchair. He wants to help people realize that living with ALS is still very much living. He is encouraged that not only is A Life Story Foundation still around, but it grows bigger every year. In fact, Swan’s next fund raiser, Cirque to Cure, is March 14 at The Mall at University Town Center. His biggest hope is that the foundation will continue to serve as a platform that unites advocates from around the globe to create a collective front against the illness for years to come.