Defeating ALS One Step at a Time

The smile on her face and the occasional quaver in her voice are the telltale signs that Linda Berman has spent the past 15 years of her life well. Over that time, while working with organizations such as Autism Speaks and the March of Dimes, Berman has made a career—and a life—out of helping people with serious obstacles live longer and better lives. A year ago, she was recruited for a new job with the ALS Association of New York, organizing its seven annual fundraising walks known collectively as Walk to Defeat ALS, which raises money, awareness and quality of life for people with Amyotrophic Lateral Sclerosis (ALS). Her primary job responsibility? “Helping people find the joy.”

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Joy is not a word usually associated with ALS. For the 30,000 Americans living with the degenerative condition, there is no cure. “The average age of diagnosis is between 40 and 60, right when people are in that prime of life and they have families and jobs and right in the middle of it they are hit with a fatal diagnosis,” Berman said.

The Huntington native first heard of ALS in her 30s, when the father of a friend was diagnosed. Years later, during the summer of 2014, she and her family joined everyone else in the world in the ALS Ice Bucket Challenge, a viral sensation that raised a windfall for research and awareness for what had been a little-known condition. That dousing with cold water was a catalyst and not long after she put her event management skills to work for the cause, becoming ALS Association of New York’s senior walk program manager.

This year’s events begin with a walk in New York City in May before reaching Westchester, New Jersey and the Hudson Valley throughout the year. Berman is particularly excited for the Long Island Walk to Defeat ALS—the largest such event in the country. It takes place in East Meadow on Sept 16 and will draw 10,000 participants and raise hundreds of thousands of dollars. “In 2016, the seven walks raised over $2 million. [We’re] trying to build on that and in the future maybe add another walk, but making these seven the best they can be.”

Aside from raising money, the walks also include ALS patients as participants in a day full of hope and respect for the lives they are living. “So many of our families say they didn’t realize how many people they touched until they started a walk team.”

This emotional connection is the driving force behind Berman’s work. “If I can help improve their quality of life and find joy in spite of the circumstances, that’s my goal…There will come a day when someone I’ve connected with will pass away and that will be very difficult. I can’t change what will happen but I can make the now the best it can possibly be.”