Unlike many high school students who are more preoccupied with adolescent romances or Friday night escapades, Ben Lewis sees his world in a different light. Ben is an incredibly bright and talented young man who is doing everything he can to help those living with ALS. His older brother, Mathew, was diagnosed with the disease in 2000 and it affected Ben in a very profound way. “I remember the exact day of Mathew’s first symptoms. He rode his motorcycle from Montana to our home in Pittsburgh and he noticed his hands weren’t as strong as they used to be,” recalls Ben.
As Ben gradually witnessed the unforgiving effects of ALS, he decided to take a stand against the disease. “My Bar Mitzvah was the first time I really saw how much my stepbrother was regressing and how serious of a disease ALS was,” explains Ben who approached his parents, Anne and Edward Lewis, about donating $24,000 from his Bar Mitzvah to The ALS Association. His parents consulted with Mathew, who was extremely touched by his younger brother’s gesture. Not only did Anne and Edward allow Ben to donate the money, but they also matched it with a $24,000 gift of their own.
In April of 2004, Mathew lost his battle was ALS. As Anne explains, Mathew meant the world to Ben and his younger brother, Andy. “Mathew was more than a big brother to Ben and Andy, he was also a mentor and teacher in helping them learn how to accept the difficult challenges life throws our way.” Inspired by Mathew’s courage, Andy also decided to follow Ben’s footsteps and donate over $35,000 of his Bar Mitzvah money to The ALS Association, which his parents once again matched.
Now 17 years-old and a soon to be high school senior, Ben has taken his fight against ALS to the next level. Ben and several close friends formed the Business Investment and Philanthropic Society at their high school. They did this to learn more about business and the stock market and, because of Ben’s influence, they decided to choose The ALS Association as their charity. Their first fundraising event, “Squash ALS,” was a squash tournament and silent auction that raised over $10,000. Ben received additional assistance for the event from The ALS Association’s Western Pennsylvania-West Virginia Chapter, which donated a signed Curt Shilling baseball jersey and helped with brochures and press releases.
Because of the success of “Squash ALS,” Ben and his friends have plans to organize the event again next year with the goal of raising an additional $10,000. Also in the works is a golf tournament and possibly a benefit concert. The Business Investment and Philanthropic Society has done other small fundraisers in which they invested the money raised into the stock market. When Ben and his classmates graduate high school, they will cash in their stocks and donate that money to The ALS Association. Ben also recently participated in the planning and corporate fundraising of a Fashion Show for a trendy Pittsburgh magazine, which raised another $10,000 and benefited the Western Pennsylvania-West Virginia Chapter of The ALS Association.
Even with all of his extracurricular activities, Ben still has time to run his design company, Spark Concepts, which handles over 40 clients. “I work on some projects myself, but I also outsource work to other designers. This company allows me to pursue my two main passions, design and business,” explains Ben who also founded a start-up bottled water company called PurBlu Beverages. PurBlu is currently working on several brands of bottled water, including a "charity-focused" brand that will debut this fall. After he graduates high school, Ben would like to follow his father’s footsteps and study business at The Wharton School of the University of Pennsylvania.
There is little doubt that Ben will achieve great things in his life given the fact that he has already accomplished so much. His young confidence and energy provides hope to those battling ALS that treatments and a cure will one day be discovered. When the torch in the fight against ALS is passed to the next generation, Ben will undoubtedly be the one holding the handle high. For Ben, defeating ALS is serious business.
