Transforming Health Care through Innovative and Impactful Research

Life was good for Jim Humay and his wife Marlene. They were able to retire early and enjoy spending time with their adult sons. Then Marlene began having some difficulty in projecting her voice and being heard in conversations. After many doctor visits, testing, and uncertainty, they heard the devastating diagnosis: Lou Gehrig's disease - ALS. After a recommendation to get a second opinion, Jim and Marlene were led to Dr. Scott Heller at Northwestern University and the Les Turner ALS Foundation. Dr. Heller confirmed it was ALS. Walking out of the appointment together, Les said to Marlene, "We will beat this thing." Little did he know the extreme challenge presented in that statement. Jim and Marlene found Dr. Heller and Ms. Wendy Abrams, the Executive Director of Les Turner, to be beyond wonderful, caring, and nurturing. The couple lived each day as fully as they could, but Marlene's condition deteriorated rapidly. Jim was able to care for Marlene at home with lots of help from family and dear friends. This support was given with great love and empathy, and has been cherished and held closely to this day.

As Marlene's neuromuscular system weakened and started to fail, the Humays needed more support than they could have anticipated, and the Les Turner ALS Foundation, Dr. Heller, and family and friends were with them every step of the way. Marlene was determined to dance with her youngest son at his wedding. She did this, held closely by all who loved her. Marlene passed away 2 years, 4 months, and 29 days after her diagnosis, surrounded by her family.

Jim remained active with the Les Turner ALS Foundation, helping in various capacities and still holding to the belief that "we will beat this thing." When contacted about serving on a peer review panel for the Congressionally Directed Medical Research Programs ALS Research Program as a consumer reviewer, Jim agreed, eventually serving on four such panels. Jim found the experience challenging and very rewarding. He was encouraged that so many in the scientific community were seeking direction, clues, and answers to this devastating disease. The researchers and clinicians on the panel embraced Jim, looking upon him as an equal and eagerly accepting his input. Following service in peer review, Jim accepted an invitation to serve on the ALS Research Program's Integration Panel as a consumer reviewer to help guide the programmatic goals of the program and identify the best research for funding. In his two years of service on this panel, Jim found the same dedication and desire to find answers and treatments for ALS. The panel members have again been very welcoming to Jim and his input. With continued funding and the effort and dedication of the scientific community, Jim still believes "we will beat this thing."