ALS Voices

Project Main Street raising funds for ALS patient care

6 months agoAlex Wilcox

Chicago Cubs and Marquee Sports Network play-by-play broadcaster Jon “Boog” Sciambi is on the Board of Directors for Project Main St., a grassroots ALS organization committed to providing patient care.

When Tim Sheehy was diagnosed with ALS in 2006, he only had one condition when his close friends asked if they could help.

“We wanted to help him, and he was very reluctant to accept any help,” said Mike Rosen, one of Tim’s childhood friends from Roosevelt Island outside New York City, and a founding Board Member of Project Main St. “He finally agreed to let us help him if we would agree to something much bigger than that, and that would be us working together with him to create something not just for him, but that would help people in his situation in the future.”

Through this friendship and Tim’s vision, the group created Project Main St., dedicated to providing financial grants directly to people to ALS. While Tim passed away in 2007, his tight-knit group of Roosevelt Island friends has carried his light forward, helping people in their time of greatest need.

A little over 15 years later, Project Main St. has distributed more than 2.1 million dollars in grants, impacting more than 350 individuals and families battling ALS and has a goal in 2022 of distributing at least $300,000 in grants, more than half of which is projected to fund home health aides, with the rest going to a variety of needs dependent on the individual.

“This disease is so progressive and moves so fast, that any wasted time is a lost opportunity to help,” said Rosen. “From day one, we knew we wanted to help as many people as possible, and to move quickly. We don’t sit on funds, we raise money and then we fulfill needs.”

As a small organization – Project Main St. has no salaried employees and just a small group of board members – it’s the passion for doing good that keeps each member going.

“Our biggest fear is to not be able to meet people’s needs,” said Rosen. “So, we’re constantly fundraising and constantly receiving requests. Lou Gehrig Day is such a blessing as it brings more light to Project Main St. and our cause with ALS.”

One of the faces of Major League Baseball’s Lou Gehrig Day each season is Marquee Sports Network broadcaster Jon Sciambi, a childhood friend of Tim Sheehy, who uses his platform calling Cubs games to raise awareness for Project Main St.

“Jon has been so integral since day one as a great friend of Tim’s, and has just always been a good person,” said Rosen. “He’s embraced this with everything he’s had, and his leadership in ALS advocacy has been amazing.”

For Jon and Mike and Tim’s wife, Katie, and all those affiliated with the organization, Project Main St. is a way to continue Tim’s legacy as Tim would have wished – by helping others.

“Tim talked about how even when things aren’t going well for you, that you can still help others, and that’s an ongoing life lesson for us,” said Rosen. “We’re so proud that our group of childhood friends has continued to come together to help others in ways that wouldn’t have even been imaginable to us.”

Among the many beneficiaries of Project Main St. grants, include:

Maceo Carter

Maceo Carter, diagnosed in 2016, living in Arizona

“I would spend summers as a kid in North Carolina with my grandparents, and anything my grandfather did, I would do. He would sit in his rocking chair every day watching the Cubs game for hours, and I remember those days vividly. Andre Dawson was his guy, so then he became my guy.

“When you associate finances and ALS, you often talk about whether it’s needing a trach, or a new bed, but just living with a terminal illness is hard … living with it still comes the normal day-to-day stuff and that affects your disease. If you can’t afford food, that’s going to affect you. That financial help that groups like Project Main St. can provide to alleviate stress is so helpful.

“The grants that Project Main St. is able to provide because of fundraising events like Lou Gehrig Day helps me and my family live the best life we can.”

Karen Mey

Karen Mey, diagnosed in 2016, living in Massachusetts

“A native of Watertown, Massachusetts, Karen started to show symptoms of ALS back in 2013, but at the time so little was known about ALS that no one expected that sort of diagnosis. After getting several opinions from some of the best doctors in the country she was officially diagnosed in 2016. As everyone could probably expect, medical bills, medication, and supplies are extremely expensive and Project Main St.’s grant has helped us tremendously. Sometimes the hardest thing is admitting you need help, and sometimes other charities make it even harder.

“Project Main St. has made us feel that they genuinely cared for us and for what we needed, which made the whole process so much easier. Project Main St. made us feel comfortable and supported from the start and it has been a blessing to have gotten this grant.”

Submitted by Karen and Steven Mey

Vicki Vanzetta

Vicki VanZetta, diagnosed in 2022, living in New Jersey

“Vicki is a fighter to the fullest degree, still finding ways to smile throughout all that she is going through. Though she is struggling, she finds joy in the small things in life and loves to look out the window of her sun room at the trees and landscape. She is the strongest and toughest and smartest person I know, and my most beloved hero.

“Vicki has been fortunate in the sense that Project Main St. has granted her funds that enabled her to purchase a comfortable lift recliner for people with disabilities. Donating money and raising awareness for the disease is paramount to the future of people with ALS.”

Submitted by Vicki’s sister, Liz Branshaw

Donate to Project Main St. 

Tune-in on June 2 as Marquee Sports Network honors Lou Gehrig’s legacy with a special game broadcast dedicated to raising money and awareness to fight ALS and find a cure. 

READ MORE: Supporting Project Main St.: Marquee GM shares personal perspective

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