One Man's Mission to Rewrite the Story of ALS
After being diagnosed with ALS in 2012, entrepreneur and communications guru Kevin Swan started A Life Story Foundation (ALSF).
If Kevin Swan had to choose a title for his life story, it would be “Strength in Numbers.” From coast to coast, Kevin has met numerous people throughout his life in all four of the major U.S. time zones who have become an integral part of his support system. After being diagnosed with ALS in 2012, the entrepreneur and communications guru started A Life Story Foundation (ALSF) with a mission to rewrite the ending to the life stories of people living with ALS. Every day, he is facing his disease head-on through his work with the foundation and keeping a close relationship with the ALSF’s exclusive research partner, the ALS Therapy Development Institute (TDI). “Having worked for a global ad agency and a successful start-up before my diagnosis, I now get to use the skills I loved acquiring every day,” says Swan, a graduate of the Arizona State University Mass Communications program.
Kevin is not only the CEO/Founder of A Life Story Foundation, but also a frequent contributor to the Huffington Post blog, where he shares his experiences of living with ALS. “I try to always write with the idea of ‘relatability’ in mind,” Kevin says. “Very few [people] know what it’s like to have ALS, but everyone’s run into trouble at the airport.” Making his disease relatable is just one challenge he faces with the mission of ALSF. The research required to adequately develop and trial new drug therapies at ALS TDI is rather costly but absolutely necessary to finding better, more effective treatments for ALS patients. By June of this year, the ALSF will have raised over $500,000 since its inception just three short years ago. The hard work that takes place at ALS TDI is heavily dependent on the generosity of ALSF donors who have contributed and attended fundraising events across the country.
“I like to present our research partner, ALS TDI, with a check at every event so our attendees really get to see where the money goes,” says Kevin. “I am excited that the check at this year's ALS Casino Night will be our biggest yet.” The event Kevin is referring to is the 3rd Annual Debartolo Family Foundation’s “All-In” for ALS Casino Night on April 24 at Lakewood Ranch’s Lake Club.
The Casino Night event brings in a live band, delicious food, an open bar, and of course, some gambling-style games. “There’s something for everyone at the event,” says Julie Swan, ALSF’s Chief Financial Officer and Sarasota/Bradenton event coordinator. Coming up on the organization’s third year, there has certainly been a notable sense of ALS awareness in the community. “The support for ALS in this area has been amazing.” Many supporters either know Kevin or his family from when he lived here and attended high school in Bradenton, or they have come to know his story through the events hosted locally. According to Julie, the local event turnouts are typically strong and because of this dedicated group of local supporters, it makes for “a fairly intimate evening.” With the added exposure gained from the viral social media ALS Ice Bucket Challenge back in Summer 2014, the awareness and fundraising for ALS research continues to grow on an even larger scale.
Can’t make it to the Casino Night event? Check out www.alifestoryfoundation.org for ways you can donate directly to research for ALS therapies.