Faces of ALS: A Vision for our Future

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Here’s the story of another year of extraordinary fundraising, passionate advocacy and, as always, hope for a cure. It’s the story of a group of individuals that are constantly looking to the future, ensuring we are here for every person living with ALS in Chicagoland.

Our Les Turner ALS Foundation Board of Directors is made up of dedicated and energized men and women, most with personal connections to ALS. Our Board works tirelessly, oftentimes behind the scenes, to ensure we continue to provide the best care for people living with ALS, foster a dedicated community of support and keep our mission focused on a finding a cure.

Our Board’s commitment to supporting each person living with ALS, and those who love them, every step of the way, is their north star. Here’s what they had to say about what it means to be a part of the Les Turner ALS Foundation Board of Directors:

“My connection to Les Turner is deeply personal, as the organization served as a tremendous informational and emotional resource when my mother was diagnosed with ALS in 2012. Although my mom did not live in the Chicago area, the Les Turner Support Services Team provided informal but invaluable consultation to me throughout the process. Not only am I now able to express my gratitude in action, but I am able to do so in an organization that embodies hope and grounded realism.” – Daniel Libit

“Being on the Board of Directors is a give/get in the best sense of the term. By giving ‘time and treasure’ to our work of supporting people living with ALS and their families, funding important research and educating others about ALS, I get to pay forward the exceptional care and support my late husband and our family received when we faced our battle with ALS.” – Mary Lou Pisone

“My first interaction with the Les Turner ALS Foundation was in 2013 when I joined the clinical team at the Lois Insolia ALS Clinic at Northwestern. I was so amazed with the support and care the Support Services Team provided and how knowledgeable everyone was. I remember thinking how fortunate the clinicians and our patients were to have the Foundation’s support, which is rare in medicine. I was honored to be invited to the Board and I am so excited to be part of this amazing organization, working together with Northwestern Medicine to re-define ALS care in the Midwest. My work with the Foundation and clinic is the most important and rewarding work.” – John M. Coleman, III, MD

“Being a board member means that I will have the support and opportunities to be an advocate in my own community.” – Deborah Crockett

“The Foundation provided support and guidance through my mother-in-law Mary’s illness and then during my husband John’s journey. It was the services of the Foundation that ensured Mary and John received the best care possible and family members had they support they needed as ALS is a disease of the family. When John was diagnosed in 2014, his drive was to raise awareness. He wanted to shine a light on ALS. After his journey ended in 2016, I felt it was my challenge to continue what John started. Being a member of the Board of Directors allows me to carry on John’s mission to ‘Roon ALS’.” – Meg Rooney

“I think it is important
 for people to give back to the community of their time and money to make the world better. ALS is a cruel disease and being a part of the Les Turner ALS Foundation is my way of paying it forward.” – Joel A. Schechter

“It means that I serve on a board where board members and staff are joined together with the same passion and love to help people living with ALS, their families and the broader ALS community. It is a labor of love for us all!” – Kenneth A. Hoffman

If some of their faces look familiar, that’s because you probably saw our board members at one of our events this year! A few of our members even have a favorite event they attended:

“The ALS Walk for Life is my favorite event because several members of my extended family traveled here from Pennsylvania, Arkansas and Texas to share in the event with my family and help remember my Aunt Irene.” – Thomas F. Boleky

“My favorite event was the tour of the four research labs last August. I was very moved by the dedication of all the researchers working diligently under the directionof our four distinguished lab leaders, Dr. Kalb, Dr. Siddique, Dr. Kiskinis and Dr. Ozdinler – each vigorously pursuing a different aspect of the ALS puzzle.” – Joan A. Parker

“My favorite event this year was our ALS Walk for Life because I loved seeing the people living with ALS and their families so filled with hope and togetherness, it was truly heartwarming. Plus, I love being in beautiful downtown Chicago in the morning!” – Alan Turner

“I always enjoy the Strike Out ALS 5k and 1 Mile Run, Walk & Roll at Guaranteed Rate Field. The run around the actual playing field is a lot of fun!” – Phil Schwarz

“I love working the ALS Walk for Life – watching as teams gather sharing stories, laughter and hope.” – Robin Fern

The overarching mission of the Board is to create a world free of ALS and our members are excited for the future:

“With our dedicated and enthusiastic Board (including five new members), the fabulous and efficient office staff and Support Services Team, four research labs constantly making inroads and more people financially supporting our efforts, I am very hopeful that in the not-so-distant future we will have more answers to this mysterious disease.” – Bonny Gaffen

“There’s a lot going on! The partnership with Northwestern continues to expand, the staff and board are inspired and we have positioned the Foundation to continue on the mission of providing the finest services to people living with ALS and provide much needed research dollars to our research and awareness.” – David T. Hoppe

“I’m eager for the continued research at the Les Turner ALS Center at Northwestern Medicine.” – Harvey Gaffen

We are extremely grateful to have these men and women as members of our Les Turner ALS family who won’t quit until there is a cure. Here’s to 2019 with our Les Turner ALS Foundation Board of Directors!