A common warning for inquisitive people is, "Don't ask the question if you don't want to know the answer." Spin that around, though - what if you knew the answer, but did not want to know the question? That was the dilemma facing Dr. Steve Senderoff in 1997 when he was diagnosed with Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's Disease.
With a Ph.D. in organic chemistry, Steve was experienced in making discoveries that others may not even notice. While playing a guitar solo several years earlier, he said his left hand and fingers suddenly did not feel right - the first indication of what would lead to his diagnosis.
"I had been involved in biomedical and pharmaceutical research my entire adult life. I knew the score," Steve said. "When I was diagnosed, I fainted."
As he faced his mortality and started thinking about where his ashes should be scattered, Steve met Dr. Terry Heiman-Patterson at the ALS Center of Hope in Philadelphia. Working with her team helped temper his fears, center his focus, and give him positive and encouraging messages regarding his condition, both at the present and into the future.
"The Center of Hope team helped me realize that time is measured by what you give and do for others," Steve said. "They introduced me to the outer limits of technology by showing me how to spell my name with my brainwaves. They are master healers, and through their efforts, they helped to minimize the damage that ALS did to me."
Steve said Dr. Heiman-Patterson's team also helped him stay current and involved with his profession and one of his main interests by demonstrating ways to make scientific contributions and make music with computer technology. Small wonder why he says of the team, "They saved my life."
As his doctors determined that Steve's condition was long-onset, he realized that his scientific training and medical knowledge would be beneficial not only to him, but to others with ALS. Thus, the early seeds of advocacy were planted before even before he perhaps realized it.
"My musical training allowed me to make intense personal connections with other ALS patients and their families, and spread the message of hope and empowerment I learned at the ALS Center of Hope in Philadelphia," Steve said. "With my voice synthesizer, I gave talks at educational events. I also wrote music for fundraisers, and gave interviews to reporters and appeared on TV, telling everyone that people with ALS were not waiting hopelessly to die."
Those early seeds of advocacy began to truly blossom and bloom in the years that followed. Steve often presented his scientific credentials to politicians, making a strong case for continued research. Among the groups for whom he has worked are the ALS Hope Foundation, the ALS Association, and the Philadelphia Institute for Neurodegenerative Disorders. He also took part in many clinical trials, lending his own body and condition to further the cause.
"The more I gave, the more I received," Steve said. "I had the privilege to meet true heroes - other people with ALS. I speak for them, and for those who passed on. I continue their fight."
Steve's advocacy took another step when he was named a consumer reviewer for the Department of Defense Amyotrophic Lateral Sclerosis Research Program. Working with fellow scientists and representing consumers, he saw it as another responsibility to his friends with ALS and their families.
"I realized I could make an important personal contribution to the fight against ALS - that's why I wanted to be a peer reviewer," Steve said. "ALS is going to take me down someday, but I will get the last laugh. I gave as good as I got, and it will be defeated."