Text courtesy of, and more photos of the event at: Blacktie Pittsburgh
It was a packed house at The Duquesne Club on May 4th as The ALS Association Western Pennsylvania Chapter presented The Anne Lewis Advocacy and Humanitarian Award to The Live Like Lou Center for ALS Research. In years when the event is held, the award recognizes extraordinary leadership in ALS advocacy, philanthropy, patient services, and/or research that has enhanced the quality of life for people living with ALS.
Among the guests in the audience that evening was Anne Lewis, the inaugural recipient of the 2010 award. The ALS Association of Western Pennsylvania’s Executive Director, Merritt Holland Spier, was quick to mention why the award was named after Anne. “Because of her absolute dedication and unwavering commitment to ALS,” said Merritt. “Thanks in large part to Anne’s diligence; ALS patient care is now a line item in the PA state budget.”
It is passionate work that Anne continues today because her crusade is a personal one. Her stepson Mathew, who was diagnosed with ALS at a young age, succumbed to the disease in 2004. Anne began her relationship with the chapter shortly after, advocating for patient care and working with the Chapter to raise funds through the Pennsylvania Department of Health. Through her work Anne met and became close to several individuals and families ravaged by ALS. It is why she continues to advocate at the state and local level for funding, research, and to improve access to care.
“It’s been 77 years since Lou Gehrig gave his brave speech about ALS in Yankee Stadium, and we still haven’t found a cure,” said Anne. “Meanwhile, each year in the United States another 5,600 new patients are diagnosed. Unfortunately, I know all too well the devastating toll this disease takes on a person’s life and sense of dignity. If we can map the human genome and restore eyesight to the blind, surely we can find a cure for ALS.”
“Anne is a dear friend and one of our region’s most prominent champions for ALS patients and their families,” said Merritt. “We are very fortunate to have Anne collaborate with us as we try to put an end to this horrible disease.”
Ask Anne how she feels about the legacy of her award and she will immediately tell you that there is no I in Team; collaboration IS the key to progress. It is also why the evening is especially poignant for her. The recipient of the 2016 Anne Lewis Advocacy and Humanitarian Award is an organization that shares both her passion for a cure and her vision of collaboration. That organization is Live Like Lou.
Neil and Suzanne Alexander established LiveLikeLou.org, a fund of the Pittsburgh Foundation, when Neil was diagnosed with ALS in 2011. The organization has a threefold mission to promote awareness of ALS, support scientific research targeted at finding a cure and help provide comfort and care to ALS patients and their families throughout Western Pennsylvania.
“Neil always used the term ‘Onward’, said Suzanne. “He never looked back and he wanted to leave ALS better than he found it.”
Anne Lewis and Neil Alexander teamed together in many ways to achieve impact. Whether that was setting up meetings with key leaders in both the legislative and executive branches of the Commonwealth of Pennsylvania, writing op-eds to the newspapers, or speaking out to make the general public more aware of the disease. Their work made our communities more aware of ALS and emphasized the needs of ALS patients and their families. Their efforts produced startling results as well.
By joining forces with other ALS patients from across the region and the state, Anne used her well-established relationships to leverage funding through the state budget in a first-ever Department of Health grant of $300,000 in 2010 to the ALS Association. The Anne Lewis Advocacy and Humanitarian Award Event, Patient Care Fund and State Grant have helped generate over $2.2 million for ALS patient care.
Thanks to various initiatives of LiveLikeLou.org supporters The ALS Association Western PA Chapter is able to provide specialized equipment to patients and pay for small home modifications to help improve the quality of the life for those living with ALS. In addition, the LiveLikeLou.org “Iron Horse Awards” program helps children of ALS patients to enjoy memorable childhood experiences. Ones that would not otherwise be possible due to the overwhelming costs associated with caring for someone with ALS. (The cost in the later stages of the disease can be as much as $250,000 per year.)
Most notably, Neil and Suzanne Alexander set the vision and strategy to build the $10 million The Live Like Lou Center for ALS Research at the University of Pittsburgh’s Brain Institute. Neil’s last public act was a pledge to raise $2.5 million over the next five years to make the Center a reality, and the University of Pittsburgh matched that pledge to bring the initial funding commitment of $5 million. Unfortunately Neil died on March 24, 2015 at the age of 49.
As a HUGE Pittsburgh Pirate fan and Lou Gehrig historian, Neil’s incredible legacy continues on through LiveLikeLou.org honoring the example that baseball great Lou Gehrig set for all people living with ALS. The 2016 Anne Lewis Advocacy and Humanitarian Award was accepted by Suzanne Alexander, daughter, Abby, and son, Patrick.
“Neil accomplished so much in the short time he had,” said Anne. “I’m delighted that Suzanne and the family are helping to carry on Neil’s work through The Live Like Lou Center for ALS Research at the University of Pittsburgh Brain Institute. I know how much this effort meant to him.”
“This is a regional award,” says Anne, “but even on a national level, Neil’s contributions through LiveLikeLou.org and The Live Like Lou Center for ALS Research are unparalleled. He really did live up to his role model in “hitting it out of the park.”
At Blacktie-Pittsburgh, we couldn’t agree more. As a result of LiveLikeLou.org initiatives and the critical care provided by The ALS Association Western PA Chapter, the City of Pittsburgh is poised to become a national leader in ALS patient care and research. And this collaborative spirit of working together for all those living with ALS is a home run for sure!