Dylan White: Volunteering to Tell the Story of the ALS Community

Dylan Header

 In recognition of National Volunteer Month, we are shining a spotlight on some of our amazing, dedicated volunteers and highlighting the incredible work they are doing to support our mission and make a difference for people living with ALS and their families.

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They say life is what happens while you’re making other plans. That’s kind of what happened to Dylan White. He had his heart set on being a musician, playing in bands all his life. He only went to film school “as a backup” and continued playing music while he was in school. He even moved himself to Music City USA—Nashville, Tennessee—to try and make that happen.

But then a funny thing happened. His friends in the Nashville music scene started asking the film school guy to help them out with their music videos. Not surprisingly it turned out he had a knack for it. “I fell in love with cinematography and photography through that and haven't looked back,” Dylan said.

Actually, to say ‘he had a knack for it’ is under-selling Dylan’s talent quite a bit. He soon had a career as a photographer, cinematographer, editor and producer. His work has been featured far and wide and won awards.

Dylan and dad

So that was now the plan, but then once again life had different ideas. Dylan’s father had been experiencing puzzling symptoms for a while, but it took a while longer to determine it was ALS.

“He was diagnosed in 2017. We had a lot of years preparing ourselves for that to be a potential outcome but, at the end of the day, there is no way for anyone to prepare for that news,” he said. “I was living in New York City at the time and shortly after his diagnosis, I moved back to Pittsburgh to be close to him and my family. It wasn't even a question for me.”

My Dad has always been my biggest champion. Growing up, whichever avenue I went down, he had my back and gave me his full support. I am forever grateful to him for that and mimic him in my journey as a new father.”
Dylan White

Dylan wanted to find a way to use his talents to give back and reached out to help those who had helped his family. “I had heard and witnessed everything the (ALS) Association was doing to help my dad and my mother and immediately was drawn to the incredible work they were doing,” he said.

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Photo by Dylan White

While the time and abilities given by all our volunteers is greatly needed and appreciated, Dylan’s professional background provided an opportunity to fill some specific needs, like event photography and video production.

“Dylan approached and offered his help with any filming or photography needs we had in the upcoming event season. He was eager to get on our radar and volunteer his time for any future needs. We started to invite him to events, and as promised, he kept showing up,” said ALS Association Managing Director, Development Kristi Marsili. “When we first got the content back from him, we realized how talented he really was!”

He was so talented and so nice to work with. He ALWAYS had a smile on his face and effortlessly interacted with the community he was capturing.”
Kristi Marsili
Managing Director, Development

And then the stars aligned. Looking for creative ways to increase attention for a monthly giving program and to create engaging content to share the story of their supporters in the community, the ALS Association team reached to the perfect person who was now part of their community: Dylan.

“When we approached him with the concept, he was overflowing with ideas and suggestions. He really took the creative reigns from there and helped to develop our ALS Allies video campaign,” said Marsili. “The style, format, and storytelling all came from Dylan. He volunteered his time for this entire project, attending a filming party with our monthly donors, working with our sponsor reps, and then creating a new video each month for two years, he was amazing.”

The greatest gift you can give is your time. Your time supporting an Association like this has such an incredible ripple effect. There are still so many unknowns with ALS, so every ounce of support is helping to make this disease livable and easier in so many ways for so many families.”
Dylan White
photo by dylan
Photo by Dylan White

Even while life continues to happen, Dylan plans to continue to give his time to support the ALS community, just as he feels they have supported him and his family.

“I've been able to meet so many amazing people along the way at our shoots and different events. So many people going through the same thing, so many incredible families,” he said. “(I’m) happy to be considered a partner through my services and even happier to call them all friends and family.”


Thank you, Dylan, for all that you do to support the ALS community, and for allowing us to share your inspiring story this month. And thank you to all of our volunteers who so graciously give their time to help support the ALS community. We could not do what we do without you!

To learn more about how you can get involved in the fight against ALS like Dylan, visit our website HERE.

To continue following stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.


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