When Michael Bartone was diagnosed with ALS in 1999, his brother Dom promised to be by his side. After Michael lost his life to ALS in March 2002, Dom made a new promise — to continue the fight for a cure not just for Michael, but for the thousands of people who live with ALS every day.

Dam Bartone (second from right) and the Michael Bartone Memorial Committee were ALS Association Greater Philadelphia Chapter Volunteers of the Month

Shortly after Michael’s death, the Bartone family and their friends formed a Memorial Foundation to accomplish three goals: Carry on his battle with ALS, preserve his memory, and continue his unselfish inspiration. Uncle Charlie was the lead organizer of the golf tournament and dinner dance in 2002 and Dom Bartone continues to give credit and thanks to Charlie’s early work, though Charlie has himself since passed away. Michael played rugby for fourteen years, and in 2003, Ray O’Malley developed and organized a rugby event to raise money and awareness for the fight against ALS in memory of his friend. They called it the Scrum for Six in honor of the number that Michael wore during his playing days.

Back in that first year, the committee struggled to get even two rugby teams to play. Forecasts of rain dampened turnout and spirits. Things changed the day of the storm when, that Saturday, a surprised meteorologist changed his prediction on TV saying, “You may wonder what happened to the storm. Well, an impressive, intense, strong willed high pressure system came from the north and pushed it out to sea.”

The Scrum for Six committee was sure that it was no high pressure system. It was Michael, intense and strong willed as in the days he played. Their venue now had a full day of good weather with rugby for all.

The Old Boys together at the 2011 Scrum for Six

The Old Boys, mostly former teammates of Michael’s, played in that first event and continue to provide the anchor match every year. They are ready to return again in 2017. Read more at https://www.facebook.com/events/447506298936959/

A lot has changed since that first Scrum for Six in 2003, but one thing hasn’t — the love for Michael. He and Dom were just four years apart, but their spirits remain united. Dom continues to fight because he knows nothing would stop Michael either.

In fact, Michael himself continued to play rugby until his body would not allow it. Dom saw how the disease took away something that Michael loved, but he also saw that it wouldn’t and couldn’t take away who he was at his core. The committee members celebrate Michael not by just fighting ALS, but by putting together an event that is connected to who he was and celebrating that instead of merely mourning. The Scrum for Six is fun, it’s competitive, and it raises money every year that help The ALS Association. Since it started, the rugby events have raised over $145,000 for The ALS Association and an additional $29,750 in scholarship money, which goes to a senior attending Thaddeus Stevens College of Technology.

Chapter Executive Director Jim Pinciotti recognizing the Michael Bartone Memorial Foundation for their fundraising efforts in 2012.

In total, between the rugby event and the golf outing and dinner, over $524,000 has been given to The ALS Association by The Michael Bartone Foundation. Like Michael, the Foundation is impressive, intense, and strong-willed for the greater good.

Rugby seems to attract those kind of individuals, who refuse to quit and are determined to move forward through anything. That includes Mike Deeley of Columbia, PA. Mike was diagnosed with ALS in 2016, and, like with the Bartones, his first concern revolved around family.

In early 2017, Mike Deeley reached out to The ALS Association. He was determined to find his own ways to make a difference, not just for himself, but for all people with ALS. He signed up for Advocacy and then he looked into events. When he called the Chapter, he said “I’m thinking of starting a fundraising event. I’ve been active in Rugby and have other interests too.”

Mike Deeley (center) is just as strong-willed to defeat ALS. His fundraising efforts are online at: https://www.rugbysmashals.org/

As soon as Mike Deeley said that he was into rugby, the Chapter insisted that he talk with Dom Bartone and a new friendship was born. Dom invited him to join the Scrum for Six to see how they raise money and awareness for the ALS cause. Next week, they’ll get together and, while honoring the promise to Michael Bartone, they’ll be advancing the mission with new events and ideas.

After talking with Mike, Dom wrote in:

While Michael played a number of team sports, there was something special about Rugby for him. And while some of that was the sport itself, much more was about the men that played it who became close mates, and the community united by the bond that the sport and the clubs form. It was important for Michael to think that he would provide inspiration for others as he had been inspired. There is nothing more inspiring for the organizers than to look across the pitch on that Saturday in May and see what the Scrum for Six has become. People who played with Mike, and those that never met him have prioritized the day making it a must attend with some travelling across the country to be there.

And now, as we circle back with another Mike — Deeley- that Rugby community rallies and the bond grows stronger. Pulling together for a mate in need. But more than in need, still with a match left in him. As the other Mike wrote, “It’s a tough match, but I’ve been in ’em before and the boots are all laced up”. There’s no lack of fight in either Mike. And, on a little poetic license on what we like to say — Their battles are not lost unless we quit.

The promise continues and is renewed at the 2017 Scrum for Six. Sign up today at https://www.facebook.com/events/447506298936959/

Mike Deeley has gone from wondering how he could do more to now being excited to increase the size of his rugby family.

I’ve never met Mike Bartone, but I know we are from the same family. You see, Rugby is something that is infectious and attracts a certain character of people. No, not just tough guys who like to play hard, but, more importantly, people that care for others more than they provide for themselves.

Like Mike, I struggled with my symptoms assuming they were due to hard hits and age. Like any other injury as I got older, I would first think it’s time to hang up the boots. Then, I would start thinking about how I am going to rehab and come back for more action. My time on a starting lineup was very much toward the end but, I needed to show an example to our young players. And, maybe steal a couple of minutes here and there. As time went on, and several visits to the neurologist, I learned that this was not a battle that I could rehab from and return to the game. Some people may stop and simply live with what they have, as we really don’t have a choice in the long run. I consider this one more opportunity to give back to my Family, Rugby Team and Friends by setting an example of how to love life and live strong.

Also like Mike, my Rugby team has rallied around me. Yesterday several players showed up at my house to help with spring yard clean-up. Just another group of people putting someone else’s needs in front of their wants. Each time that happens, it gives me more energy to give back. Small things like this eventually show the world the way things should be.

Dom Bartone and Mike Deeley know that the way things should be is that, like in rugby, people stick up for each other in the worst of situations. Join them for the Scrum for Six on Saturday, May 13 and then watch as they advance the mission to fight ALS with future events this year. That’s a promise that both families are happy to keep.

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