While sitting in the waiting room lobby, Matt Bellina began Googling his symptoms: cramping hands, twitching arms, stiffness in his legs. Before he was called back for his EMG, he came to the conclusion that he had ALS.
His doctors, however, hoped differently. “They were like, ‘Well, you don’t meet all the criteria. So maybe it’s not that and maybe it is.’ And there was a lot of back and forth for literally another 17 months. But by the time I was actually formerly diagnosed, I knew for sure,” said Bellina.
ALS, otherwise known as Lou Gehrig’s disease, attacks nerve cells in the brain and spinal cord, causing those with ALS to lose control of their muscles.
Bellina was officially diagnosed on April 9, 2014. According to ALS.net, a non-profit organization where Bellina is an ambassador, most ALS patients live 2 to 5 years after their diagnosis. But, two years after his diagnosis, Bellina is not only an ambassador for ALS research, but a father of two boys and the founder of Matt’s Mission at Newtown Athletic Club.
Nine months after Bellina and his family started working out at Newtown Athletic Club in Newtown, Pennsylvania, Bellina asked the owner if they would be interested in fundraising for ALS.net. It turned out, the club was already fundraising for Augie’s Quest.
Augie Nieto, the co-founder of equipment manufacturer Life Fitness, who was diagnosed with ALS in 2005, started Augie’s Quest. Newtown Athletic Club told Bellina if he wanted to get involved, they could “make it really big.”
Linda Mitchell, the director of public relations of Newtown Athletic Club, came up with Matt’s Mission as the vehicle for Newtown Athletic Club to raise money for Augie’s Quest.
In 2015, their goal was to raise $50,000, which Bellina did not think would be possible. With the help of the members and Newtown Athletic Club founder Jim Worthington, they raised $180,000, which is 10 percent of the total amount raised for Augie’s Quest by IHRSA clubs in 2015.
“The members are so generous,” said Bellina. “Obviously, the owner, Jim, is super generous. And then this year, just this last fall, another member was diagnosed, so they decided to hit it hard again. And so far, we’ve raised $100,000 this year, in the last 2.5 months. And we’re going to keep going. Who knows where it might go.”
And he has hope that he himself will beat this disease. According to Bellina, ALS is not incurable, it’s underfunded.
He encourages health clubs to not only partner with Augie’s Quest to help raise funds for ALS research, but to also support their members with the disease.
“I think that making them feel like they’re a part of the community, like the NAC has to me, [is important],” said Bellina. “Making them feel like they’re still valued members of the club. I mean, it’s hard when your muscles are wasting away, going to the gym and seeing everybody working out. That has just made me slow down and realize what I am doing is still valuable. Even if I’m not bench-pressing 300 pounds, I’m still setting goals and working toward them. I think if a club can help an ALS patient do that, then we’re on the right track to getting where we need to be.”
To find out how you can support Augie’s Quest, visit page 72 for a special feature on Team Quest4ALS.