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Spotlight on…David Buseck and Linda Levine

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David Buseck grew up in Tempe, Arizona. After finishing his Master’s program in Optical Sciences at the University of Arizona, he moved to California to begin work right away. Shortly after arriving, David met Linda Levine, another recent “California transplant,” having moved from Ohio just a few months earlier. The two were married in 1989. David spent 32 years working in various technology jobs, with the second half spent with radiation oncology equipment at Varian Medical Systems. Linda’s career has been in education, working at San Jose State University for over thirty years. Her degree in recreation therapy has provided her with the background to be a successful personal coach, specializing in helping people lead more meaningful lives. David and Linda both love mentoring and spending time with children.

“Some are nieces and nephews in the traditional sense, but there are lots more that call us Auntie and Uncle without any blood ties,” shared David. “I also volunteered with the local Court Appointed Special Advocates (CASA) chapter, Child Advocates of Silicon Valley, from 1998 to 2018. I mentored five boys who were in the foster care system. I advocated for them in dependency court and provided a reliable adult presence in their lives.” Linda ran a girls creativity and empowerment program. She also supported children and adults through grief after losses.

David enjoyed an active lifestyle of hiking, and rowing. David also has a deep love for music, which began in the second grade when he learned to play the recorder. He moved to playing the flute in fourth grade, and has not stopped since. 

While participating in a 2013 Thanksgiving turkey trot event, he noticed that he was stubbing his toe repeatedly. He followed up with his doctor, who could not identify a specific cause of the issue. A few years later, David was surprised with how tired he was at the end of a four-mile hike. He also began noticing that he was having trouble keeping up with his rowing team.

“I attributed that to me having worked out less in the prior few years,” David explained. “I went to a Kaiser neurologist in 2017 and was told just to,”…keep an eye on,” the leg weakness.” Two years later, David returned to the neurologist after noticing other atypical fatigue. It was then that David received the devastating ALS diagnosis in April 2019. 

David and Linda have not allowed ALS to stop them from doing the things that they love. David continues to find ways to adapt to the daily challenges of the disease.

“My left ring finger started drooping when I was playing the flute, and it would start pressing its key without noticing it, affecting the pitch I was playing,” David shared. “I felt like one solution would be to find a curved head joint that would allow me to hold my instrument in front, like a clarinet, so that gravity wouldn’t be pulling on that finger.” He found part of what he needed online, then with the help of some friends and a 3D printer, he created the rest of what he needed to continue playing the instrument, helping with the drooping finger plus the fatigue of holding up the flute.

In 1999, David and Linda started a travel blog to share experiences and photos of their travels all over the world with anyone who might be interested. “In late 2019, I started including information about accessibility and my experiences as someone with ALS,” said David. “Whether I’m at home or on the road, having ALS is a perpetual journey of diminishing function but also of discoveries and adaptation.

David and Linda first joined the ALS Network’s Hawaii Walk in 2022 to help raise awareness and support for others affected by ALS. In 2023, the two and many family and friends who are a part of Team Tortoise participated in the Silicon Valley Walk. As a part of that effort, David and Linda hosted a benefit piano concert featuring performer Lisa Spector to support their walk team. At the event, David also played piano and flute, using adaptive technology developed with his physical therapist to help him continue playing while living with ALS. With the help of this concert, Team Tortoise was the highest fundraising team in Silicon Valley, raising over $35,000!

“What I am finding most helpful today is adjusting my mindset to accept and appreciate what I am still able to do,” said David. “Using adaptive techniques and adjusting my expectations helps me to stay positive and engaged in life.”

Each year, the ALS Hero Award goes to a person living with ALS who makes a significant impact in the ALS community through advocacy, volunteerism, ambassadorship, and fundraising. David was honored with the 2023 Silicon Valley ALS Hero Award for his continued advocacy daily for the ALS community by spreading awareness about the disease. David is highly deserving of this award for continuing to raise ALS awareness and funds and being the true epitome of an ALS Hero. 

David and Linda have both been trained to become NEALS Ambassadors. The two traveled to Basel, Switzerland, to attend the 34th International Symposium on ALS/MND, which consisted of three days of meetings, presentations, and even a wheelchair race. The International Symposium is one of the largest annual conferences dedicated to ALS and MND research. Each year, the MNDA brings together researchers from around the world to share new understandings of ALS and other motor neuron diseases. One of the presentations was about a teenage girl who was treated with a drug that’s now in clinical trials. It has actually reversed symptoms. “It’s now more than three years after symptom onset,” said David. “There were a lot of tears in the house, including mine.”

In January 2024, David and Linda continued their ALS advocacy efforts by attending the ALS Network’s Champions for Cares and Cures gala in Los Angeles. “It’s a warm community that’s full of heart and shared commitment to the goals of improving the lives of ALS patients and our families,” David shared. “It was a really good and inspiring weekend.”

David’s contributions and efforts continue to help advance ALS Network’s mission-critical activities. In late January 2024, David was voted to join the ALS Network’s board of directors, where he will continue to help the organization advance the three mission pillars of care services, research, and advocacy. “I don’t yet know what role I will play on the board, but I left the retreat with good feelings about Network leadership and about the board that I’m now part of,” said David. “I am full of excitement and optimism about the contributions I can make.”

Thank you to David and Linda for sharing your inspiring story with the ALS Network and the ALS community! We invite you to share your ALS story as well. In doing so, you are making a difference as we work together to ensure access to essential care services and to drive the search for effective prevention strategies, treatments, and cures for ALS. 

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