John ‘J.J.’ Byrne and CF

The Herald sat down with the head of Team Shenanigans, John ‘J.J.’ Byrne, to talk about the Great Strides Walk on May 22 and his life with Cystic Fibrosis. 

Herald: How did Team Shenanigans begin?

John ‘J.J.’ Byrne: In January 2013 Ed Mangano arranged to have a bus take myself and other Island Parkers to the Capitol to see The Sandy Bill pass. Before we got on the bus there was a press conference and Ed Mangano asked if I would like to speak, When I got to the podium I said, “ stop the political shenanigans and send money to Island Park”, that’s how Team Shenanigans got its name.

Herald: How many members do you have now?

Byrne: Last year we had 42 walkers at the Great Strides Cystic Fibrosis Walk, hoping this year we have more.

Herald: Does the team do anything else other than the walk/run? 

Byrne:  Team Shenanigans Sweatshirts and T shirts every year and all proceeds goes to the Cystic Fibrosis Foundation to help find a cure. Contact Teamshenanigans65@yahoo.com or visit them on Facebook at Team Shenanigans Great Strides Walk.

Herald: In your lifetime what changes have you seen in the treatment of CF?

Byrne: There is a drug called Kalydeco that was introduced through The Cystic Fibrosis Foundation a few years ago, Kalydeco improves the lung capacity/lung function of CF patients. Unfortunately Kalydeco only helps 4% of the CF Population with a specific mutation, not the mutation I have. But, hopefully there will be better news attached to this drug, The drug is going to be retested on all mutations with hope that it will make a difference in all CF patients lives. In 2016 there are more Adults living with CF than children, and this is because of the Cystic Fibrosis Foundation and all they do. 

Herald: What is the hardest part of CF to deal with?

Byrne: Having to do all my meds and treatments everyday, especially when I have to get up so early on school days to get them in, also would love not to have to go to the doctor all the time, and no more hospital stays. I also do not like anyone to feel sorry for me, I would rather someone ask me about CF so I can explain to them what I have.

Herald: What would you like people to know about CF?

Byrne: That Cystic Fibrosis is not contagious it is genetic, myself and other people with CF are just like everyone else, the key is to stay regimented with meds and treatments. There are approx 30,000 people in The US with CF. There is no government funding at all for CF, mainly because there are so few people who are afflicted with CF. In order to have CF a person must have two copies of the defective CF gene, one copy from each parent. One in every 31 Americans is a carrier of the defective CF gene, but don’t have the disease.

Herald: How does the CF Foundation help you?

Byrne: The CF Foundation is made up of chapters all over the country, ours is Nassau/Suffolk eastern Chapter. I cannot say enough for our CF chapter; they are like family to us and are there anytime we need something. More importantly they keep me in loop of all the latest info and news within the CF world, and they care about what I have to say, and listen to my advice about subjects that are important to me. The CF Fibrosis Foundation helps with the high cost of the specialty medications that I have to take every day to stay healthy.

Herald: Where does the money collected go?

Byrne: All money that is collected from all of the donations goes directly to research for a cure, and to families affected by Cystic Fibrosis.

Herald: What would you like to be (do) when you grow up?

Byrne: I would like to be Mayor of The Incorporated Village of Island Park, and pursue a career in politics and law. I will continue raise money for The Cystic Fibrosis Foundation, and as always bring awareness about CF to as many people as I can.

Herald: Any college plans yet?

Byrne: This summer I plan to go tour some colleges that I am interested in, I want to study political management, and then attend law school.

For more information on J.J., the Great Strides Walk, Cystic Fibrosis or Team Shenanigans Tee shirts to support J.J. are available.