Jupiter's Joe Mitchell takes on 'Crossing For A Cure 2018' after battling Cystic Fibrosis

In 2013, Travis Suit and three friends (Joseph Morel, Shane Pompa and Kyle Igneri) paddle boarded from Bimini, Bahamas to Riviera Beach to raise awareness for the salt water benefits on Cystic Fibrosis lungs.

These four men would become known as Pipers Angels, and their journey as Crossing For A Cure.

Cystic Fibrosis is a genetic life threatening illness with no cure to date, affecting about 70,000 people worldwide.

“People with this condition either don’t make enough or make an abnormal version of a protein called cystic fibrosis transmembrane regulator (CFTR). CFTR is present on the cell surface in many organs and regulates the movement of salt-sodium and chloride ions, as well as water across the cell surface.

"When CFTR is absent or defective, the mucus normally secreted by the cells in the pulmonary airways (breathing tubes), pancreatic ducts, gastrointestinal tract, and the reproductive system becomes thickened. This thickened mucus causes blockages, frequent infection, and loss of function in the affected organs. Cystic Fibrosis can affect the whole body, including the lungs, pancreas, liver, digestive and reproductive tracts," according to the American Lung Association.

A team of paddlers intent on raising awareness

In 2017, Travis Suit once again set out to cross the Gulfstream with a team of paddlers intent on raising awareness for Cystic Fibrosis in addition to raising funds for Pipers Angels Foundation. Travis created this to assist families facing challenges with Cystic Fibrosis and to establish a life-long ocean based activities program (Salt Supply Program).

Crossing For A Cure 2017 set new records with 34 men and women paddle boarding and blowing the goal of raising $50,000 out of the water. Pipers Angels raised $133,000 with plans of raising $250,000 in 2018.

MORE: What was it like in Crossing For A Cure last year?

On June 16, 2018, Pipers Angels, now numbering 100 and including not only paddle boards, but kayaks, outriggers, and prone paddlers will once again make the epic crossing from Bimini to Florida. Suit said that they are really more focused on being inclusive to other types of vessels and will have a recreational group crossing in addition to crossing racers. “By creating the competitive division of the event and putting up a cash purse, we’ve seen a very exciting response from the paddle community.”

Due to the success of Crossing For A Cure, Pipers Angels Foundation is very close to launching their Salt Supply Program. “Saltwater activities have been scientifically proven to benefit the lungs of people with Cystic Fibrosis," said Suit. “The salt air breathed in helps to break up the congestion in cystic fibrosis lungs caused by the build up of mucus and allows for better airway clearance, thus preventing recurring lung infections that are so detrimental to the condition of CF lungs and their ability to breathe. Getting into this positive salt environment is also emotionally beneficial for people who are constantly doing hours of therapies and spending weeks at a time in the hospital.”

The Salt Supply Program was created after it became apparent to Suit that there was no lifelong sustainable program to empower people with cystic fibrosis to learn the basic skill sets needed to live a salt life. “If you’ve been given a terminal diagnosis, and the doctor is saying that saltwater activities are the best for you, that’s like being given a prescription for the ocean.”

Salt Supply is developing into the world’s largest saltwater activities based program for people with Cystic Fibrosis and will be an online community and virtual village that connects people with cystic fibrosis to saltwater related people and activities such as surfing, sailing, boating, beach yoga etc.

“One super cool asset of the program is that anyone who loves saltwater activities and the ocean can join Salt Supply as a member and by joining and earning Salt Points they will help our CF Salt Supply members earn their own Salt Points. So it’s a true win-win” said Suit. On a local level, Salt Supply is a program that helps to get people with cystic fibrosis interested and participating in saltwater activities, such as Brett Street and Joe Mitchell who are paddling this year.

Joe Mitchell, Cystic Fibrosis paddler

Diagnosed with Cystic Fibrosis at six months old, Joe Mitchell felt he had a fairly normal childhood with the exception of having to take a lot of medicines and do daily breathing treatments.

He grew up in Vermont playing baseball, soccer and hockey and said his parents devoted themselves to his care. However, when he turned 16 and was given reins to his own self care, he soon realized that he was not mature enough to understand the implications of not living a healthy lifestyle. He soon began being hospitalized every six months and saw a decrease in his lung function to just 55 percent.

MORE: CROSSING - From years past: 'We will be going into battle.'

According to his mother, Cynthia Mitchell, RN, BSN, “There were many challenges to overcome as we learned of Joe’s diagnosis with Cystic Fibrosis. Issues surrounding insurance and figuring out how to pay for costly medications and treatments was and still is ongoing. We had to deal with the bureaucracy of agencies that were identified as support which there was not an abundance of.

"Added to that were loss of wages, motel and food costs, and travel expenses whenever hospitalization or clinic visits occurred. Due to concerns of cross-infection, it was a very isolating disease. We relied on the CF team for guidance, which mostly consisted of addressing medical needs. Growing up with CF impacted social, emotional, and psychological well-being for the whole family. There was very little support available.

"The biggest challenge we face with Joe now is figuring out the financial support that is needed to live with CF. It is difficult to keep up with regular daily bills when your life is interrupted by medical needs. We still support his financial needs which impacts his self-worth and his goal to be independent. Through the generosity of the Cystic Fibrosis Lifestyle Foundation, Joe applied and received a grant to offset the costs of a gym membership for a period of time. This type of support is vital to improve the quality of life with CF.”

Joe had his 'ah ha' moment

Recently, Joe Mitchell had his “ah ha” moment, “It was a huge psychological thing and I thought since I was only at 55 percent lung function I could only do about half as everyone else. Then I realized it doesn’t matter what the number is, it’s just a number on a piece of paper. My lungs may only work at 55 percent but I have 100 percent of that 55 percent to use and it felt like I was only using 50 percent. I had a mental shift and from then on it felt like part of my lungs unlocked and I could start using them again.”

While hospitalized in the Fall of 2017 Mitchell met Travis Suit along with Liz Mirson and Chris McDermott from Pipers Angels through an introduction from his social worker, Megan Hamerdinger. They brought him some healthy snacks and more important a newfound friendship began.

Mitchell recalls having an immediate connection with all three, but he and Liz Mirson bonded over their love of tattoos.

Significant body art

“When I was 22 years old," said Mitchell, "I realized I wanted to do some type of significant body art to chronicle my personal journey with Cystic Fibrosis. I already had lungs tattooed but wanted something to do with roses and found inspiration from a foundation called the 65 Roses Foundation which was founded by a mother with three CF children. I wanted one rose for every year I was alive and only have 24 because I ran out of money.”

Mirson used her connections and found a shop and artist that were willing to get Joe’s tattoos up to date (A Stroke of Genius Tattoos in Boa Raton and Deerfield Beach and tattoo artist CJ Scesa). “I originally started with red roses but I wanted to signify the different artist as well as the changes I’ve been making in my life, so I went with a completely different style and did photo realistic black and gray. They stand out and show the transition in my life and the new artist.”

Mitchell also got involved with husband and wife team Mike and Kat Porco, who created the Attain Program, which includes individual and group counseling, along with personal training tailored to each cystic fibrosis persons needs. Their encouragement got Joe back into the gym again and feeling good, and the next hurdle was addressing his specific dietary needs.

“The common knowledge for cystic fibrosis was to eat everything you can in sight because we are naturally malnourished because of the disease. However, I found that is not a good way to go about it. When you get told you can eat whatever you want, you literally do and what I wanted wasn’t healthy. I was eating tons and tons of carbs. I would eat veggies and meat, but was very carb heavy. In recent years there has been research done that shows a correlation between poor blood glucose control and high blood sugars actually contributing to the infection rate and intensity in cystic fibrosis people.

"The premise is all of that sugar that is just free floating around inside of you, when you have a high blood sugar, some of it gets dumped directly into the lungs and that feeds the bacteria that we all colonize inside our lungs. Ever since I switched to strict Ketogenic diet, the difference in my symptoms because of diet change and exercise has been night and day. The secretions I have in my lungs are thinner and not as dark green … they are still unhealthy looking but better than before,” Mitchell said.

A classroom environment

Travis Suit saw the benefits this program had on Joe and encouraged him to expand upon it and create a nutrition program for Pipers Angels. Joe has since been named Director of Nutrition.

One of the goals is to create a classroom environment in which “we will be able to bring caregivers of children and teens of cystic fibrosis patients and present research. I want to tell them what I did and the benefits I have seen by changing my eating and work out habits. It is very difficult to change an entire families eating habits, but when they see the effect it has had on me, hopefully they will want to implement some of these.”

Through the changes, Mitchell has made in diet and exercise, and his relationship with Travis and Pipers Angels Foundation, he said he is doing extremely well and is hoping to not be hospitalized as often as before.

Although, he says, “I could catch one bad cold and it could knock me back in the hospital. That is one of the hardest things to deal with. The fact that I am doing the very best that I can, but just from catching something out in the world could knock me back down. The lack of control is so hard to deal with and to overcome. The vast majority of people in the United States go to work and walk about in public when they are really sick instead of staying home. That makes going to work for a person with cystic fibrosis or other immune system issues like walking through a minefield.”

One of the two paddlers with Cystic Fibrosis

Mitchell will be one of two paddlers with Cystic Fibrosis who will participate in Crossing For A Cure 2018. He will be making the crossing on a 13-foot Hobie Revolution kayak that has both paddle and mirage drive (pedal). The board is stable, cuts through the water and rides the waves really well and Joe has been getting in as much practice as possible.

His biggest challenge will be dehydration and he will be bringing liquid electrolytes along in his kayak. Joe said his arms and legs can carry him the 75-mile distance thanks to all of the training he has been putting in on the water and in the gym.

Asked what his thoughts on the upcoming journey are, Joe said, “Pipers Angels has become my tribe.

"When Travis proposed the idea to me I knew it would be a big time commitment and a huge challenge. I hadn’t started working out yet and truth be told I have a phobia of water. I didn’t learn to swim until I was 12 years old and needed to overcome this fear. But, I believe in what Travis is doing and there is minimal support out there so we can make a difference. The message and passion that is involved with Pipers Angels is totally infectious.”

Special gift

"Joe has received a special gift with the discovery of the Piper’s Angels Foundation. They have been instrumental in helping Joe discover passions and have provided support socially, emotionally and psychologically to achieve a richer quality of life. They have given him a purpose and continue to provide opportunities. Organizations which work to improve the lives of families in the cystic fibrosis community are extremely important. I am forever grateful for the Pipers Angels Foundation as they continue to inspire action and improve the quality of life for those living with cystic fibrosis,"

according to Cynthia Mitchell, RN, BSN.

For more information, please visit crossingforacure.com and look for an upcoming feature on the actual Crossing For A Cure later this summer.