On October 29, 2023, a party was held at the Great South Bay Brewery in Bay Shore, NY to honor the memory of Debbie Jackowski-Borge. Organized by Debbie’s niece Melissa, the party featured beer, music, food, and an auction. It attracted a big crowd from the local community – including several people who knew and loved Debbie during her life.
In addition to celebrating Debbie’s life, the event made a big contribution to fighting the disease that took her life – ALS. The party was organized as a benefit for the Ales for ALS™ program, which supports the ALS Therapy Development Institute (ALS TDI). All beer sales, auction proceeds, and other donations went to fund ALS TDI’s essential research to find effective treatments for everyone with ALS.
Melissa has been involved in ALS advocacy ever since she watched what Debbie went through after being diagnosed with bulbar ALS in 2013, which she lived with for two years before passing in 2016. She was particularly inspired to get involved after learning that there were no effective treatments that could have helped her aunt.
“It's 2023,” she says. “People deserve to live. People should not be dying this way in 2023. Lou Gehrig was diagnosed in 1939. That’s 84 years. Why are people still dying? We need to slow this down and hopefully soon we need to cure this. I’m sick of watching my friends, people that I love, die of this disease.”
She began volunteering as an advocate with I Am ALS, first on their legislative affairs team, and currently with the Promising Pathway. It was through these efforts she first her friend Mandi Bailey, an advocate for veterans with ALS. Mandi, the recipient of the Fran Delaney Challenge & Respect Award at this year’s ALS TDI Leadership Awards, introduced Melissa to ALS TDI and our mission to discover effective treatments to end ALS. Melissa immediately knew that she wanted to support this mission however she could.
“I really think it's important to support ALS Research,” she says, “and ALS TDI was the first organization that I learned of that just studies ALS. That's all they do. They don’t bring in other diseases. I think comprehensive ALS research is so important, and I wanted to work with ALS TDI specifically because I learned so many amazing things about them through Mandi.”
Already knowing she wanted to support ALS TDI, Melissa was inspired when she attended an Ales for ALS™ event hosted by her friend Alexandra Cavaliere, who is living with ALS and active in Her ALS Story, and her mother in Connecticut. Ales for ALS™ is a program in which brewers raise money for research at ALS TDI by brewing special beers using a unique blend of hops donated by Yakima Chief Hops and Loftus Ranches.
Melissa believed that a similar event in Debbie’s hometown of Bay Shore, NY had the potential to similarly raise funds and awareness for her aunt’s disease. Together with her family, she approached the Great South Bay Brewery about hosting an event and getting involved. The brewery was not only enthusiastic about hosting a fundraiser, but they also decided to brew an Ales for ALS™ beer of their own – named Debz Zepplin in honor of Debbie.
Melissa expected a good turnout – her aunt was well-loved in her community and had many friends she expected would come to honor her memory. However, all her expectations were exceeded. The brewery was packed throughout the event. Between beer sales, donations, and an auction featuring prizes donated by community members, they raised more than $10,500 to support ALS research.
“I think the success was a testament to truly how much my aunt was loved and missed by a lot of people,” says Melissa. “It reminded me of her funeral – the church was so packed we had to turn people away. You mention her name in Bay Shore, NY and everyone knows who you’re talking about. She was very loved by everyone. I'd like to thank all my family, friends & community for coming together in remembrance of Aunt Debbie & helping to put together an amazing event.”
Melissa says she’s already planning to hold the event again next year. For more information about this year’s event, and to donate, click here.
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