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Shaun O’Hara hosts golf outing for Cystic Fibrosis

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It was the 16th hole on the Old Course at Trump National Golf Course in Bedminster, New Jersey. Shaun O’Hara lined up his tee shot, about 160 yards away from the hole with a lot of water between him and green. Six iron in hand, O’Hara took a mighty swing. A few seconds later came the sound of a familiar splash as the ball hit the water.

“Don’t think that one is going to make it,” former teammate Eli Manning quipped as he struggled to control his laughter as O’Hara turned with a big smile on his face. The day wasn’t about the golf. It was about the cause.

Last Wednesday was the Shaun O’Hara Foundation’s 10th Annual Golf Outing to support Cystic Fibrosis research.

Former teammates like Manning, David Diehl, Zak DeOssie, Jeff Feagles, Plaxico Burress and Rich Seubert were in attendance ,and most have been consistent attendees over the last decade.

“Anytime we can get the group together, whether it’s dinner or golfing, there’s always that comradery and brotherhood from that team and it is special,” Feagles said.

Many Giants that played in the 80’s, long before O’Hara donned blue, like OJ Anderson, Mark Bavaro, Karl Nelson and Billy Ard have become staples of the event. They were joined by current Giants that never played a down next to O’Hara. Davis Webb, Brett Jones, and Riley Dixon all attended.

“It’s been special,” O’Hara said. “I remember the first couple years, when I was still playing. I was in awe of the support I got from the guys in the locker room. Not just the guys I was playing with at the time but the former Giants that came out. That was really cool. Now as a former player, for current guys that don’t know me and never played with me, but we share the NY logo, to come out, it is very special and something I really value. When you become a member of the New York Giants, whether you are a current or former player, we are all brothers and we are all family.”

“I think it is a credit to Shaun and the player he was, and the person he is and the impact he has made as part of the Giants community,” Manning said. “As Wellington Mara said, ‘once a Giant, always a Giant.’ These younger guys just understand it is important to reach out and make an impact and come here and help out the former players who are doing great things in their community and they look at it as a way to play some golf at a great course and help out.”

Other NFL greats and celebrities like Sterling Sharpe, Tony Siragusa and Melissa Stark joined to support the cause. Donald Trump himself has played in the outing in years past.

Shaun O'Hara Foundation

O’Hara’s foundation found its genesis back in 2007 when he became the Ambassador of Hope for the Cystic Fibrosis Foundation for New Jersey. He started his own foundation shortly thereafter and became connected to the cause by a young man named Sean Squires, who had been diagnosed with Cystic Fibrosis.

Sean’s father, Bill Squires, a game day operations consultant for the Giants, was the spark.

“I knew when Sean was diagnosed with Cystic Fibrosis that I had to raise money,” Bill said. “One of the first things I did was go to the Giants and asked if they had someone they thought could be a spokesperson for us and without any hesitation, they mentioned Shaun O’Hara. He stepped right up to the plate and I can’t believe in their 10th year they’ve raised nearly a million dollars for the cause.”

The connection between Shaun O’Hara and Sean Squires is about more than just the charity.

“Shaun has become one of my greatest friends,” Sean Squires said. “Before I was even diagnosed with CF, we met because he was such a great person. Then a year later, I found out I had Cystic Fibrosis and he was the perfect person to raise awareness. He has been like a big brother to me.”

For O’Hara, he has always tried to make the event about the kids dealing with the disease.

“It’s been really cool seeing the kids and see how much they’ve grown,” O’Hara said. “Some of these kids were babies when we started this and now they’re in high school, they’re driving, getting their licenses and going to college. It is cool to see.”

“He’s 5’7 now, not 4’11, he’s got tattoos on his arm and living in New York City,” Bill Squires said of his son. “He’s a different kid because of the money raised at events like this. It is very important for us and we will start looking forward to this event next year tomorrow.”

“Shaun has seen me every year back to when I looked completely ugly,” Shaun joked as his family laughed. “And now I’ve grown up and I’m living on my own. That journey is crazy when you think about it and I’m happy the event is still going on.”

Cystic Fibrosis is a genetic disorder that causes damage to the lungs and digestive systems. It affects the cells that produce sweat, mucus and digestive juices. It causes those secretions to become thick and sticky, clogging the same areas they are meant to lubricate. CF afflicts only 30,000 people in the United States and 70,000 people worldwide, which makes raising money to find a cure very difficult. It is the number one genetic killer of children in the United States.

Just a decade ago, those with Cystic Fibrosis rarely lived into adulthood but with new treatments, patents are now living into their 20’s, 30’s and beyond. The disease can be managed by daily therapies in the morning and evening, and countless pills to help lung function and digestion.

Kids can spend nearly 500 hours a year in a mechanical vest that helps their lungs function, and can take more than 6,500 pills in a healthy year.

“Cystic Fibrosis is a lonely disease for them,” O’Hara said. “They can’t really be around other kids and they feel isolated. (Exposing kids with CF to others dealing with the disease can pass on germs that makes their condition worse.) That they can’t be together at events makes it tough. I think a day like today is always great to see them relax, feel special. I think it is also just great for the families. For them to be celebrated and let them know they have a team and that they aren’t fighting this battle alone is what the day is all about.”

The kids are always front and center at the event every year.

“I think it is very impactful,” Manning said. “A lot of times you play a charity event, you really don’t know what you’re playing for, but when you see these kids that are here, you know you are helping them live a better life and hopefully to get the treatments and everything they need to enjoy their youth and live a full life. You see first-hand the impact you are making.”

“To be able to go out there and golf with the kids is special,” Diehl said. “They’re in the cart with you. You drive around and they spend the day with you. Just to see them having fun and swinging a golf club, not thinking about their medical illnesses or the treatments or therapies they are going through. Just for that day. it lets them just be kids.”

“This is unique because they pair you up with one of the kids and you spend the whole day with them,” DeOssie said. “You let them putt for you and they tell you about school. It’s just a blast. I remember last year I played with the same girl a couple years in a row and her mom was telling me she may have a boyfriend, and the year prior she didn’t even like boys. It’s just fantastic to watch them grow up and always keep in touch. I love being here.”

“That was really by design,” O’Hara said. “We wanted the kids to have that connection. I think for them to really just have the day and establish a friendship, that’s what today is all about. We want support, people to donate and have a good time, but we want people to build a relationship. I go to a lot of events and sometimes you leave there and you don’t remember anything and we don’t want that to be the case.”

“The kids get to see the people that want to support them and help them get through this,” Sean Squires said. “There are people that do care, besides their families that are there for them that want to help make this a cure found and do whatever they can to speed up the process.”

Anabelle Christ has been a success story in managing the disease, playing lacrosse in High School.

“Personally, what makes it special is Belle,” Feagles said. “Ten years ago, I was in this tournament and now she is a young woman. She is playing lacrosse today, so she can’t be here today but seeing her grow up and seeing her friends throughout the years this has been going on is great.”

“The Shaun O’Hara Foundation has brought awareness to Cystic Fibrosis in New Jersey in a way that no other private foundation has,” Belle’s mother, Liz Poret-Christ, said. “Shaun’s love of the children and desire to create a memorable day will stay with these children forever. Belle woke up from her very first O’Hara golf event in 2009 and said it was the best day of her life. His heroic influence on her childhood was nothing short of a miracle. Belle’s accomplishments as an athlete, committing to play at Goucher College in Maryland, has been largely influenced by her relationship with Shaun. We consider the New York Giants and Shaun O’Hara two of the greatest gifts in Belle’s life and we will be forever grateful.”

The disease is still a struggle every day for the many kids afflicted with it.

“There were supposed to be 20 kids here today,” Bill Squires said. “When Shaun mentioned that almost 15 couldn’t make it because they got sick, I could hear some moans from people in the crowd. It is very difficult for people to understand. When you see they can’t be around each other or show up to something they look forward to every year, it really touches a lot of people.”

The event has seen great growth over the past 10 years. Jim Ruh is the Executive Director of the Shaun O’Hara Foundation.

“The growth has been tremendous,” Ruh said. “When we started, we were at a single course and we had to return checks because we ran out of room at the facility. We’re very happy with Trump National because they have two courses and we can double up on the support.”

Much of the money raised at the event goes to the Cystic Fibrosis Foundation.

“The CF Foundation is known for having a very efficient operational budget,” Ruh said. “Ninety percent of every dollar is used for actual research. Having letters and the thankfulness and the support of the families is great. Shaun is brought to tears when he reads how grateful these people are, that this was the greatest day of their life and they look forward to the event and mark it down the minute they hear about it. To have that effect on children really speaks for itself and gives you a powerful feeling.”

There is still a long way to go, thanks to the unique challenges of the disease.

Shaun O'Hara Foundation

“The only way to find a cure is through money and research and that is what today is about, so we can help them,” O’Hara said. “What has been remarkable is that, and I didn’t even know this when I started doing this, is that there are so many strands of the disease that even if they come out with one drug, it might only affect 40 percent of the kids . So we had a drug come out a few years ago called kaleidoscope and it was great for the kids that it helped, but there were a lot of other kids that it really didn’t help… it’s a big challenge.”

So how much longer will the event continue?

“I’d like to say another 10,” Ruh said. “It goes by quick and it is a lot of work, but seeing the results and seeing things happen and the people supporting it makes you motivated to do it for another 10 years. It’s been an amazing ride. Time flies. It gets better every year, thanks to our supporters. Going through 10 years has been quite a run. There are a ton of people from the volunteers, to the celebrities to the New York Giants side that have been here all 10 years and it has been great.”

“It’s kind of like a long drive,” O’Hara said. “You just want to get one first down. In year one, you host an event and you just hope people show up. Year two will let you know how you did in year one. To have it every year, there’s some years when we say we won’t do it anymore because it is too much work, but when you get to the day and you see the effect on the kids and families, you hope you do this for another 10 years.”

“With Shaun, he’s really a class guy,” Ruh said. “He’s almost too nice. He gets a lot of asks and does for a lot of different people but is hesitant on asking other people to do stuff for him. The people that meet him, you never have someone who doesn’t want to help him and support him.”

In other words, expect to see the tournament continue to take place for a very long time.

The Shaun O’Hara Foundation can be found on Facebook (CLICK HERE) and on the web HERE: http://shaunoharafoundation.org/

The Cystic Fibrosis Foundation can be found HERE: http://www.cff.org/

Shaun O'Hara Foundation

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