My friend Greg Gingold, who I went to Israel with on Birthright years ago, recently contacted me to tell me his brother’s story. Greg’s brother, Scott Gingold, was diagnosed with ALS in 2014, losing the ability to walk a year later. Since then, Scott has thrown himself into activism work, writing to his US senators, state senator, and state representatives about bills he is passionate about, and why they should or should not vote for them.
A key piece of legislation that Scott was involved in was The Steve Gleason Enduring Voices Act. This bill fights for the voices of people living with degenerative diseases, providing funding for speech assistant devices to patients with ALS and other debilitating conditions. The bill was recently passed by both houses of Congress and signed into law by President Trump. Speaking with Scott, he told me that he wrote “…these particular letters on behalf of the ALS association with their support,” working tirelessly with the organization to pass this legislation.
Additionally, Scott has been involved in legislation involving gun control, calling for US senators to back the the Assault Weapons Ban of 2018, which would make it illegal to buy, sell, transfer and manufacture semiautomatic Assault Weapons and large capacity accessories like bump stocks. He also also supported legislation to require all gun owners to purchase liability insurance, which would make them financially responsible for any damages caused with their weapons. When I asked Scott about his support of this legislation, he told me that he believes it will “…hopefully reduce the amount of senseless mass violence…” caused by guns.
While this legislation is currently in political limbo, Scott has been devoting much of his time to his family. Scott is a devoted husband and father, seeing his wife and daughter once a week despite living in a nursing home. Using a tobii dynavox eye gaze computer to communicate, Scott is able to speak with his daughter, Darby, and his wife, Marissa, by texting throughout the day
Scott says that the tobii dynavox eye gaze computer he uses “…has a sensor that follows my eye movements and I type out what I want to say. I can also access the Internet and use programs on this machine.” This significantly improves his quality of life, and allows him to be a part of Darby’s and Marissa’s lives in a more intimate way. “I have been making sure that I am a part of Marissa’s and my daughter Darby’s life. I write bedtime stories for Darby; I’ve never given up hope and Darby is the reason,” said Scott.
Before being diagnosed with ALS, Scott was an avid traveler, having honeymooned with his wife to Barcelona. He has also traveled to Rome, Pisa, Florence, Venice, Paris and Montreal. As a long-term traveler, I found Scott’s experiences traveling, as well as his activism and close relationship to his family, to be moving. This prompted me to donate to a GoFundMe campaign set up by his brother, Greg, on behalf of Marissa. With the money from this campaign, Scott hopes to ensure his six year old daughter’s future and help her and his wife Marissa and move to an apartment much closer to Scott so that they can spend more time with him.
ALS affects as many as 30,000 in the United States, with 5,000 new cases diagnosed each year. It occurs throughout the world with no racial, ethnic or socioeconomic boundaries. Scott’s efforts have been working finding relief for those with ALS as well as their families.