Jacqueline Tome’s father, Danny, passed away from ALS in 1995. He had been a devoted father of five who never drank, never smoked, went to church, and worked two jobs when necessary to provide a great life for his family. Watching someone like that deteriorate so quickly was devastating.

"He was gone in two and a half years," Jacqueline says. "It was a real blow to all of us. I was the closest to him, so you can imagine how that went down. Not well."

Navigating ALS was lonely and confusing for Jacqueline and her family. Resources were scarce, and the family struggled to get basic equipment like a hospital bed or oxygen. The experience left her reeling with grief, frustration, and a desire to create change.

That spark was ignited a few years later at a walk organized by the ALS Family Charitable Foundation on Cape Cod. Inspired by the compassion and solidarity she encountered there, Jacqueline knew she needed to do something to honor her father and help others facing ALS.

At the time, she had just gotten her motorcycle license, and with many friends who rode, the idea clicked—she would organize a bike run. This idea would become Danny’s Run, a motorcycle rally and community fundraiser that brought together riders, music lovers, and supporters from across her Massachusetts community. They gathered to ride, remember, and raise money for the families, like hers, who struggled behind the scenes to care for a loved one with ALS.

Bringing Back Danny’s Run

The ride was an important event in her community for seven years. Then, in 2010, the President of the ALS Family Charitable Foundation retired, and the organization shut down. With her main fundraising beneficiary closing, Jacqueline decided to take a break from organizing her event. It was a break that would last 15 years, until she decided to recognize the 30th anniversary of her father’s passing by reviving Danny’s Run earlier this year.

As she began to prepare for the new edition of Danny’s Run, one of the first orders of business was finding a new organization to support. The earlier versions of Danny’s Run had mainly benefited the ALS Family Charitable Foundation’s efforts to provide support and equipment for people living with the disease. However, she had also given some funds to organizations specializing in research, including the ALS Therapy Development Institute (ALS TDI).

“When my dad had ALS 30 years ago, our family didn't have a lot of resources just to get oxygen or equipment,” she says. “So, most of the money ended up going to what I was passionate about—to families that needed help navigating ALS and getting wheelchairs, beds, all of these behind-the-scenes things that are involved with someone who has ALS. But we also took a portion and sent it to ALS TDI.”

Choosing to Support ALS TDI

Jacqueline decided to reconnect with ALS TDI to learn more about how the organization had evolved in the time since her last event. She connected with ALS TDI Development Manager Courtney Mish, who took her for a tour of our labs in Watertown, MA. What she saw that day inspired her to fully dedicate her efforts to supporting ALS TDI’s essential research to develop treatments for everyone with ALS.

“I walked out of that tour with hope for the first time in 30 years,” she says. “When I got home, I said, ‘There's no doubt in my mind, this is who I want to support.’ I felt like I hadn’t had hope in so long, and I’ve prayed that something will happen to end this disease before I die—I’m 61. But if not my generation, then the next one. After not having any hope for 30 years, even if it’s just a little bit, that’s huge.”

Danny’s Run 2025

With a new organization to support in place, Jacqueline set out to plan the return of her event. She was able to quickly put together a plan for a full day of riding, music, and food with support from her many friends in the community. She found two bands that volunteered to play for free, a local restaurant that donated food, and several friends who provided raffle prizes. This generosity enabled her to donate all of the event’s proceeds directly to support ALS TDI’s research.

For the ride itself, Jacqueline planned a course that took them from Fairhaven to Bourne Scenic Park in Bourne, MA. There, the riders would gather at a special tree planted by the ALS Family Foundation. Around the roots of that tree are bricks bearing the names of community members who have faced the disease—including her father, Danny. After stopping to reflect, the riders would then retrace their steps to enjoy food, music, and drinks.

Unfortunately, the unpredictable New England weather did not cooperate with Jacqueline’s plans on the day of the ride in late June. A rainstorm that blew in ten minutes before they were set to leave ended up reducing the number of riders to just 23, far short of the 100 she expected. However, the riders who showed up managed to raise an impressive total, despite the weather challenges.

“I usually average about $8,000 on bike runs,” she says. “This time, I did $7700 with only 23 bikes. So, was it sad that I didn't have as many bikes as I wanted? Yeah, and it took me about a week to get over that. But on the other hand, I raised $7,700. So, I had to admit that was good. I was happy about that.”

After this year’s disappointing weather, Jacqueline says that this may have been the last year for Danny’s Run. However, inspired by her fundraising success, she says that she is already thinking of other possible fundraisers she could organize to support research at ALS TDI—although, next year, it might be something indoors.

“I can't say for sure that I won't do another bike run,” she says. “But, if not, I’ll figure out something else to do to raise money for ALS TDI. Because, like I said, when I walked out of the lab that day, and it was the first time I had hope in 30 years, that was huge.”

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