Suffolk Faculty Member Organizes 5th Annual Charity Bowlathon
On Saturday night, the fifth annual Striking Courage Bowlathon filled Candlewood Lanes with positive energy, smiling faces, and most importantly, with hope. Joining together for an evening of fundraising and to spread awareness, hundreds of people flocked to the candlepin lanes to support all of those battling Friedreich’s Ataxia. For a ticket purchase of $25, attendees were treated to unlimited bowling, food and drinks (it is a 21+ event), and the chance to win a variety of high-quality raffle items.
Friedreich’s Ataxia (FA) is a rare genetic muscular disorder that affects about one in 50,000 people. People with FA are usually diagnosed between the ages of 5 and 15, and the condition degenerates the victim’s health as time passes. Symptoms include a loss of coordination in the arms and legs, slurred speech, and difficulties with sight and hearing. Additional serious medical conditions can develop as a result of FA, and the most dangerous of these are heart complications that wind up being the leading cause of death for victims of FA. The minds of victims of FA, however, are thankfully unaffected. There is no cure and no current treatments for FA.
The Bowlathon was created in 2009 by Suffolk alum, math professor, Blackboard administrator, and professional candlepin bowler Rich Limone, and his wife Anna, who works as a nurse. The idea developed when the couple attended a fundraiser for FA in South Boston put on by The FA Project, an organization that strives to provide those living with FA the tools and resources necessary to lead the best life possible.
“We thought, okay, what can we do to help?” says Limone. “So when the Pro Series came along, I was bowling with them, and I thought what could we do to bring them together and this together? So I came up with the idea of this Bowlathon. I pitched it to the FA Project, my friends that I graduated high school with thought it was a good idea, and shockingly enough everyone said yes.”
The FA Project was started by Richie Currier and his wife Maria, along with an extensive group of supporters, after he was diagnosed with FA as a freshman in college. Richie and Rich knew each other from their childhoods in Winthrop, MA. Rich recalled the funny story of how the two became friends.
“He was on my little league team. His claim to fame was that he busted my father’s 1988 brand new Caprice Classic, the windshield. He was in the on-deck circle trying to time his swing and he let go of the bat.”
Richie is a soft-spoken, kind man with gentle eyes and an outlook on life that serves as an inspiration to all that know him and his story. His father, Richard Sr., beams with pride when he sees all that his son has accomplished and the life he has made for himself despite all of the unexpected challenges that were thrown at him at such a young age.
“He’s got a tremendous outlook. He’s never had a bad day. He’s never said ‘Why me?’ It’s amazing,” says Richard Sr. “Friedreich’s Ataxia is a very small part of his life. He’s got a beautiful wife. He’s got three incredible kids. His support group is incredible.”
That support group is what allows Richie to persevere with such a positive attitude.
“My wife is my strongest supporter,” he says. “I work full time, I have for the past 11 years for the state of Massachusetts, and she pushes me. There’s no time for me to sit back and be complacent and think of negative thoughts. I don’t have time for that.”
“Also I want to be there for my children as they grow up. I’m very fortunate to have a very committed family, very committed coworkers. My boss at work is a bartender this evening. My other boss is here, she takes me to the train at night. I go to the gym with another coworker during the day. So all throughout my career, getting pushed physically, it’s unbelievable.”
So the Bowlathon was a conjoining effort between two childhood friends, one battling a disorder that takes a daily physical toll and spearheaded an effort to fight back, and one who had connections in pro candlepin bowling along with a strong desire to help out people in need. The result was a fundraiser that has now been running five years straight and is only gaining momentum as the years go on.
“The first year we were like ‘Oh yeah if we raise a couple hundred dollars, maybe like a grand, we’ll be excited,’” recalls Anna Limone. “We walked away with like, five grand. I remember sitting there going ‘I can’t believe we did this.’ And the next year we did it again and we got better and bigger and last year we added the photo booth and more food and more raffles. Last year we raised 10,000 dollars. So each year we aim a little higher.”
All of the proceeds from the fundraiser goes to The FA Project, who uses the money to provide things like wheelchairs, accessibility ramps, and travel arrangements for victims of FA to be able to meet up with other advocates at symposiums and informational sessions regarding FA.
“We’ve worked really hard to garner this support and show what we do in the FA community,” says Maria Currier. “Because we’re a quality of life organization and a lot of stuff is research-driven. And yes, we want treatment, we want a cure, but you have to live with FA every day and our goal is to help those with FA live the best life possible.”
It is the work of The FA Project and events like the Bowlathon that attracts larger-than-life people such as Kyle Bryant. Bryant is a handsome and spirited man with a firm handshake and a confidence that cannot be contained by the wheelchair he is confined to. Bryant is the director of a group called Ride Ataxia, and has participated in numerous bicycle marathon races to raise awareness for FA. One of these rides went across the United States, from San Diego, CA to Annapolis, MD, in just eight days.
Bryant is involved with the Friedreich’s Ataxia Research Alliance (FARA), a group dedicated to funding research for finding treatments and cures for the disease. However, the work of The FA Project is just as important as funding research according to Kyle.
“One of the things with this disease is when you’re diagnosed, you feel so alone because it’s so rare. It’s 1 in 50,000. So just connecting with other people that have the same condition and they go through the same things you do,” he says.
“Personally, I have a stronger connection with people with FA than with a lot of the people in my life because nobody else understands. So just connecting with other people is the biggest thing I think for somebody personally, and that’s the service that The FA Project provides.”
Bryant, 32, has been living with FA for 15 years. Despite this, his attitude and his mentality are iron clad with a confidence and positive outlook very similar to that of his friend Richie Currier. He has the same positive outlook when it comes to his work in the research sector towards finding a treatment and, eventually, a cure for FA.
One positive aspect of research regarding FA is that scientists have been able to pinpoint a cause for the disorder. People who suffer from FA do not produce enough of a protein called frataxin, which is known to be essential for use in the mitochondria (the energy producing organelles) of their cells. As a result of this knowledge, several possible treatments have been proposed and funded for further research.
“Some of our approaches focus on increasing the level of frataxin that the body is able to make; basically tricking the body into making more frataxin,” says Bryant. “Some of our approaches focus on helping the body use the frataxin that it does make more efficiently, some of our approaches focus on delivering synthetic frataxin into where it needs to go into the mitochondria.”
However perhaps the most striking approach to battling FA comes from research being conducted in France, where gene therapy treatments on mice have yielded incredible results in both preventing the onset of FA as well as reversing its effects once the mice had been allowed to contract the disorder.
“This is real hope,” said Bryant during his speech to the attendees, causing a burst of applause.
In the end, hope is what the Bowlathon is all about. It provides hope to people living with FA by showing them that they are not alone, and that there are people stepping up to help them. It shows that advocacy groups and dedicated scientists are working hard on finding treatments and a cure for the disease that has changed their lives.
Living with FA is to live a life full of challenges, and so the mentality becomes you can either take those challenges head-on, or let it get the better of you. Kyle Bryant spoke of this never-quit mentality when I asked him about his tremendous cross-country bike ride.
“The thing is, it’s not supposed to be easy right? [Biking cross country] would be difficult for anyone. So the thing is that we all have our challenges and we all push ourselves to different levels and it’s a matter of finding your limit. I don’t know that I’ve found my limit yet. Because that’s a really common question. The fact is that I’m doing it because it’s not easy. That’s the reason I’m doing it. It wouldn’t be remarkable if it was easy.”
Richie Currier has inspired many with his own mental and physical fortitude, and he captured the feeling of the bowling alley that night perfectly, while also giving a valuable take on life itself; whether you were dealing with Friedreich’s Ataxia or simply a bad day.
“It’s mostly positive energy, people are having fun, and that’s the way that I want other people to live. To do the best while you can; live life to the fullest.”
To learn more about Friedreich’s Ataxia, click on the informational sites below:
http://www.curefa.org/whatis.html – FARA website
http://thefaproject.org – The FA Project website
http://rideataxia.org – Kyle Bryant’s fundraising program, which has raised $2.5 million since 2007
Below is a video made by The FA Project that delves deeper into Richie Currier’s life and his story.
Ethan Hartley is a senior and is the current editor-in-chief of The Suffolk Voice. He can be reached at firstname.lastname@example.org