Leon Peek knew what a diagnosis of ALS meant. He watched his father suffer from the disease. Leon says, “He always told me that ALS was just a hindrance to him but it eventually took his life.”

After experiencing some pain and numbness in his hand, 54-year-old Leon was diagnosed with the same disease that took his father’s life. “Within two weeks it was a positive decision of familial ALS which is the inherited form.”

For registered nurse Hilde Heard, the diagnosis of ALS came shortly after she turned 64-years-old. She says, “I worked with cancer patients and that’s bad enough but I thought ALS was probably worse. It was probably the last thing I ever wanted to have in my whole life.”

But Hilde and Leon have kept a positive attitude in the face of this debilitating disease. They are actively involved in the Florida Chapter of the ALS Association which is fighting to find a cause and a cure for the condition. Hilde says, “It is kind of a closet disease in a way because people don’t talk about it and people die so early.” Leon says he just wants to do anything he can to help bring awareness to the condition and the people it affects. “Just letting people understand that we want them to look our way.”

Both Hilde and Leon have represented Florida on National Advocacy Day in Washington D.C. There they met with federal officials about acquiring ALS funding and adding the disease to the national disease registry. The incidence of ALS is 60 percent higher among military veterans.