A Look Back

In 1938, cystic fibrosis was merely a concept discovered by Dr. Dorothy Andersen.  In 1955, it was still not widely known and children rarely survived to go to kindergarten, but a group of dedicated parents found their purpose in creating an organization whose mission it would be to cure their children. In 1995, our son was born and within months, a CF diagnosis presented us with decisions that would not only test our fortitude but would drive our family’s purpose. Then, through the sport of basketball, with the compassion of players and coaches alike, Coaches Cure CF made a name for itself in 2008, dedicated to supporting research programs and fundraising initiatives founded by the Cystic Fibrosis Foundation.

Purpose has fundamentally been the driving force behind the mission of Coaches Cure CF for the past 16 years and while this pillar of our organization has not changed, our lives have.  There is a time for all seasons and sadly, the season of CCCF is coming to a close.  While our heartfelt purpose of supporting the cause of cystic fibrosis will never change, our organization will be hosting its FINAL event on May 13, 2024, at Hamilton Farms Golf Club in Gladstone, NJ. 

For 16 years, Coaches Cure CF has made an impact on the CF community in the areas of research, patient endowments, Care Center support, and overall disease awareness.  Hosting numerous awareness games throughout the northeast and gaining support from collegiate teams such as Iona College, Seton Hall University, Providence College, the University of Albany, Hofstra University, St. Peter’s University and Bryant University has helped to spread awareness of cystic fibrosis, not only at games but also at tournaments with national exposure. Through the success of our annual golf invitational, CCCF has donated over $400,000 to the Cystic Fibrosis Foundation in support of their annual research programs focusing on a variety of CF-related initiatives including lung transplants, gene therapy, rare mutation research, drug development, and others. Over these 16 years, drug development far surpassed our wildest dreams with the development of modulator therapies from the Vertex Corporation, which currently offers,Trikafta, a drug that addresses the root causes of cystic fibrosis for 90% of the population.

While Coaches Cure CF’s main directive was to further the mission of a cure for CF, we were drawn to the ongoing patient struggles of battling this vindictive disease.  The CCCF Assist and the Karen and Dick Power Annual Toy Drive were born out of our desire to do more for those on the front lines of cystic fibrosis.  The Karen and Dick Power Annual Toy Drive sought to address the need of CF patients as they spent weeks hospitalized and due to infectious disease protocols, were not permitted to interact in the Child Life playrooms of the hospital. While the toy drive had large ambitions early on, we were overwhelmed by the outpouring of thoughtful kindness that grew from year to year.  As family, friends, and strangers donated toys by the dozen, our golfers pursued the opportunity to be the high bidder at the auction and have the toys donated in their name, ultimately to three different children’s hospitals.  Over the past 5 years, CCCF has raised $24,600 and has placed hundreds of toys in the hands of sick children in Boston, MA; Providence, RI; and Morristown, NJ. 

Annually, a local family has been honored for our Coaches Cure CF Assist award, which highlights their specific and individual conflicts as they endeavored to live with CF.  Coaches Cure CF presented each Assist recipient with a monetary award and is proud to have been able to directly impact the livelihoods of eight families whose circumstances have been gravely affected by cystic fibrosis with $24,000 in awards over the past 5 years. 

It is our hope that this, our last gathering, will allow our golfers and guests alike to participate in our most successful event yet, knowing that their generosity continues to impact the lives of countless children and young adults, that science as we know it has been furthered and developed because of them, and that while Coaches Cure CF  is making its final lay-up, we could not have accomplished this and so much more without them by our side.

Register for our final golf outing today.

2020 Coaches Cure CF Golf Outing Cancelled

Dear Friends,

This past May we would have celebrated our 12th year of Coaches Cure CF golf! In our time together, the extreme generosity of our guests and the success of our events have enabled the committee to annually support the research programs of the Cystic Fibrosis Foundation. In those same twelve years, we have seen Alex grow from a young teenager to a young man of 25, and with the miracle of Trikafta, his future has never looked brighter!

It is with a heavy heart that, after much consideration, and out of an abundance of caution for the health and well-being of not only our guests, but of Alex and our family as well, we have made the difficult decision to CANCEL the 2020 Coaches Cure CF Golf Invitational. 

The success of last year’s event enabled Coaches Cure CF to pledge our support in a matching gift program with the Cystic Fibrosis Foundation for 2019 and 2020. Our pledged amount of $42,000 doubles both in 2019 and 2020, potentially bringing our two-year donation total to $168,000! 

Our pursuit to cure cystic fibrosis is ever-present, and so we are graciously seeking your help to continue our annual support and honor the mission of the Cystic Fibrosis Foundation’s research initiatives.  A tax deductible contribution in any amount that your means will allow to coachescurecf.org, will help to further the ongoing, data driven, medical research for new therapies and hopefully one day, a cure for cystic fibrosis.

On behalf of the Coaches Cure CF team, our families, and Alex, we would like to extend our heartfelt gratitude for your past participation and support in the annual Golfing Invitational.  Your generous contributions combined with considerable sponsorships have provided for the annual donations of toys and electronics to the Child Life programs of area hospitals, and financial contributions to both CF families in need and the Cystic Fibrosis Foundation. 

We are truly grateful for your kind generosity and thank you for making our cause, one of your own.

Warm regards,

Jay Judge, President
Coaches Cure CF

Coaches Cure CF Inc.
4 Pierce Arrow Rd.
Hopewell Junction, NY 12533
coachescurecf.org

Trikafta and Alex Tarletsky

2020 began for Coaches Cure CF with a celebration far beyond the throws of New Year’s Eve, even one exceeding any celebration from recent memory.  Our excitement started in October of 2019 as the 4th Vertex drug, Trikafta, was approved by the FDA. In November our hopes and prayers were answered when Alex added Trikafta to his therapy regiment. 

Basically, Trikafta is science fiction in real-time. This twice-daily pill is a combination of three medications, two of which Alex was already taking.  The main charge of Trikafta is the root cause of cystic fibrosis as it proposes to correct the genetic defect of the disease at the cellular level. Even more exciting is the fact that this therapy will address nearly 90% of the cystic fibrosis population.

 Cystic fibrosis is a complex disease as it waits for no one and nothing. While winding up the fall 2019 semester of college classes, Alex’s health took a serious decline and he was hospitalized shortly before Thanksgiving.  Delaying exams, finals, and papers became a certainty while his doctors resumed the regiment of IV therapy and care which Alex had previously fought so diligently to terminate. After 2 weeks of in-patient care, he returned home with a multitude of medications and therapies in hand to combat the new level of challenges that cystic fibrosis set in place. However, Trikafta was now in hand; insurance approved, shipped, and delivered just one month after its FDA approval!

In the weeks and months since the holiday season, Alex has worked ardently to regain the level of health that seemed to have swiftly dissipated over the past 4 months. With Trikafta by his side, Alex’s health is steadily making a combative improvement. He was able to finalize his college courses from home and while the spring 2020 semester of classes is taking place locally, he fully expects to be back on campus for summer enrollment.  His overall health is strong enough at this point that his care team is currently discontinuing the three times daily IV regiment in exchange for an oral therapy program. This change will allow Alex to work part-time, attend classes, and regain much of his daily independence. He couldn’t be more excited and is thrilled with the opportunity to return to physical activity as the very real possibility of actually playing pick-up basketball and getting out on the golf course again is becoming a reality.

Planning has begun for the 2020 Coaches Cure CF Golf Invitational on May 11th.  Chris and I, along with the entire committee are excited about this, our 12th year of golfing and supporting research for cystic fibrosis.  As we celebrate Alex’s 25th birthday we can’t help but look back to see how far research has come since 1995, and we know that the progress we have witnessed is due largely in part to the sincere kindness of our family, friends, and perfect strangers. We are excited and look forward to seeing you in May, and as always, we are truly grateful for your thoughtful generosity and thank you for making our cause, one of your own.

A Double Lung Transplant Story

On April 29, 2018 we got the life changing call we had been waiting for, there was a match. John and I nervously got in the car and headed to New York-Presbyterian / Columbia University Hospital to prep for a double lung transplant. A drive we had made several times for testing, seminars and meetings to prepare for this very moment.

I remember driving to the hospital and crying most of the way because I was so frightened and one year later, as we drove home from our “Lungaversary Weekend Celebration” I was also a bit misty thinking of the family of my donor…how sad they must be but how happy they’ve made my family.

On that drive to Columbia last year I was connected to oxygen but now there’s no need for it because my oxygen saturation level is 98-99% daily. To be able to walk on the treadmill I needed 15 liters of oxygen and now I can do 15 minutes with no oxygen. I go to Physical Therapy for my rotator cuff that I injured 2 years ago lifting my tanks and portable oxygen machine. Eventually I’m going to get this old body back in shape!

In the past 15 months there have been some ups and downs. I was able to fly to our condo in North Carolina and walk up the flights of stairs to stay in it. I don't need to carry oxygen tanks around anymore. On the flip side I've spent some additional time in the hospital; sometimes expected, sometimes not. All in all I am thankful the bumps in the road to recovery have not been just that; bumps not potholes so I’ve managed to maneuver around them with the assistance and love of my family and friends.

I’ve written a letter to my donor’s family but I have not received a reply. I plan to continue to write and of course pray for them. I would love to know more about my donor. I’m so appreciative of my many friends who have told me that I am the reason they’ve signed up to be organ donors. I intend to advocate for this along with advocating for a cure for Cystic Fibrosis.

Thank you all from the very bottom of my heart!
— Monica Judge

A Word From Our 2019 Honorees

My association with Cystic Fibrosis started about 20 years ago when Sean told me that his nephew - and now my friend Alex - was diagnosed with Cystic Fibrosis. I remember attending the first event that Noreen and Chris held to fund CF research – an art auction at the Holiday Inn in Clinton. I think I’ve been at every event they’ve held since that first one, only missing a scarce few due to family commitments.

Since that time I have kept an eye on CF therapies and treatments, hoping for some relief for Alex, and all of those who suffer with this illness. Hoping for a cure for CF, and for Alex. But that's what we all are here for. My understanding and knowledge of Cystic Fibrosis has expanded due to Alex and my involvement with this group - Coaches Cure CF. 

So what’s my hope? Hope - it’s a simple word and yet can mean so much to anyone going through a difficult time. It can mean the difference between hanging on and giving up. It can cause a person to continue to fight rather than retreat. It can mean a tiny smile in the face of difficulty news. It’s one word with no true definition — hope can mean anything you want it to. 

Each and every year I see the same faces here - I love re-acquainting with all of you wonderful people who love Alex so much - we are all hoping for that call or that report of phenomenal news for Alex and other CF fighters. And every year I see new faces, new believers in the cause.

And although the day may center on the golf and the social climate of the event, I know we all walk away with a better understanding of the importance of the work that Coaches Cure CF does and a revitalized passion to help.

Coaches Cure CF is about raising money, and raising awareness, it’s about finding a cure. But to me it’s more than that - it’s about giving hope and support. It's about standing alongside Alex and his family, and telling them that, although it may not be our battle, you are not alone. We stand alongside you, with you, hand in hand, and we are here to fight for you.

It's about showing Alex the love, the belief, the confidence - and yes the hope - that we are all one day going to celebrate with Alex the news of a cure for Cystic Fibrosis.

 --- Mike Karlis, 2019 Coaches Cure CF Award Honoree

I had heard the words Cystic Fibrosis in the past, but did not know what they meant.  In fact, I remember searching on google just to find out the meaning of this disease. However, shortly into my broadcasting career, I learned many things....

I learned that "CF" were two powerful letters that way too many people lived with.  I learned about Boomer Esiason's son and his foundation from my time at WFAN Radio. I met Alex Tarletsky and heard his story through friends and family.  I learned about Jerry Cahill and his accomplishments after our family joined the Iona Prep community in New Rochelle, New York.  

It seems like yesterday I was interviewing Alex and Seton Hall Athletic Director Pat Lyons at Iona College about the forming of Coaches Cure CF.  But my memories from that first interview are not so much about the launching of the foundation, as they are about Alex's daily fight.  

The power of this disease is unimaginable.  However, so is the courage and mental toughness of every CF patient you hear of.  

Especially Alex.

We can all do our part.  Every single one of us. Whether you're a sponsor, regularly play in the golf outing or purchase Coaches Cure CF clothing, you are doing your part!

But let's not stop there.  If you're a part of the Coaches Cure CF team, help spread the word and get a few more friends on board. If you're not on board, let's get you on board.  Take the time to learn about the daily struggles and challenges of a CF patient, and I promise that you'll be inspired to support this cause.  

It starts with awareness.  It's difficult for people to support a cause they don't know much about.  That is why in the college basketball world, we are so passionate about spreading awareness via social media and wearing pins on television during our game broadcasts.  

Every dollar helps.  Every tweet helps. Every event matters.  

Little by little, we can all do our part, so that one day CF truly stands for "Cure Found."

Always a friend of Coaches Cure CF,

  -- Vin Parise, 2019 Judge Award Honoree

A Word From Our Partners

The Madness has arrived! We are so grateful that with our partnering schools assistance we hosted six fantastic awareness events and raised over $9,000 to go towards Cystic Fibrosis Research. We will find a cure!

Here is what are partners are saying about Coaches Cure CF.

 Albany
“We are proud and honored to be a part of the Coaches Cure CF movement.  It is nice to see more programs jumping on board as we continue to help raise awareness and money in the efforts to find a cure for cystic fibrosis,” said Albany University Head Men’s Basketball Coach Will Brown. “ We will continue to support this great cause and appreciate the opportunity that Brian Fessler has extended us to be a part of this mission!”  

Hofstra
“We are proud to partner with Coaches Cure CF,” commented Hofstra University Head Men’s Basketball Coach Joe Mihalich. “The work that Coaches Cure CF continues to do every day in the fight against Cystic Fibrosis is incredibly important and we all must do our part to assist in their mission. We look forward to being a strong partner as we work together to bring awareness and we applaud the work that Coaches Cure CF does.”

Iona
Athletic Director Matt Glovaski: 
“Iona College is proud to be a founding partner for Coaches Cure CF. Everything the Judge and Tarletsky families have done to grow awareness has been admirable. We are glad to support Coaches Cure CF and look forward to hosting many more events that raise awareness and proceeds for Cystic Fibrosis awareness”

 Iona College Head Men’s Basketball Coach Tim Cluess comments; 
“Supporting Coaches Cure CF and being a founding partner is something Iona and our program take with great pride. We look forward to our annual Coaches Cure CF game, and we hope to expand the mindfulness about Cystic Fibrosis across Gael Nation.”

Providence College
Ed Cooley – Providence College Men’s Basketball Head Coach
“Providence College is proud to partner with Coaches Cure CF in an effort to increase awareness and raise funds to support Cystic Fibrosis research. The Friar Family is excited about this initiative!”

Saint Peter’s
Bryan Felt, Athletic Director:
"Saint Peter's Athletics is honored to be a partner of Coaches Cure CF as they push the envelope to find cures and improve the quality of life for CF patients and their families."   

Seton Hall
“Having been involved with Alex, the Tarletsky family and Coaches Cure CF since my days at Iona has been fantastic. To see the strides the CF community has made as well as Alex with the breakthrough medicines shows that what we are doing is making a difference. I love being a part of this great cause and look forward to more medical miracles.” – Head Men’s Basketball Coach Kevin Willard

A Life of Numbers

According to Pythagoras, the universe is ruled by numbers.  I know they definitely rule mine; the hours in a day, the number of essays to grade, appointments, bills, birthdays, the list is endless. The overwhelming sense of managing and delicately balancing life’s numbers, can be, well, overwhelming. However, my son, Alex, must feel like living his life with cystic fibrosis is somewhat of a balancing act as well; as if his life is completely managed by an endless series of numbers.  Certainly in this modern world, the statistics of living with this complicated disease would have even the finest of mathematicians swirling to calculate its sum total. 

The numbers of Alex’s (CF) life began in 1995, with my nagging memory of a nurse handing him to me saying, “Oh, don’t worry we don’t lose babies anymore.  He will most likely graduate from High School, he’ll live into his 20’s.” While Alex’s life continued, his numbers grew and changed. They included key numbers, like 6; the hours required for daily IV treatments and therapy. The number 19, the staggering number of hospital admissions and PICC lines he has endured thus far. 92, the amount of days missed in a given school year. 36, the daily count of pills he ingests. 45, the scariest lung function percentage I’ve ever seen. 2 the number of prom nights at which he fought to attend and danced like there was no tomorrow. Yet, through it all, the number 1 remains symbolic. It’s the number of lifetimes my son has, and it’s the lifetimes my husband and I vowed to spend doing everything we could to bring about a cure.

Over the years, Alex grew, alternating between home and hospital, sick and well, but always battling. He learned to swing his bat in t-ball, run the field in soccer, and of course treat the basketball court like the football field I forbid him from. It was in sports though that we found a balance, an equilibrium of numbers, as the statistics of his seasonal sport overshadowed CF.  Scoring baskets and RBI’s seemed to calm the CF storm, while his rushing and passing yards in flag football eased the tide of declining numbers elsewhere.  

There’s an old saying, “little kids, little problems; big kids, bigger problems”, and in a life with CF, it couldn’t be more true.  Alex’s infant and toddler years were that old adage of baby maintenance when the sum total of medications, doctor appointments, and the endless cycle of insurance wars were enough to make us think it was survival at all cost.  Yeah, I was “that” mother because I drove through McDonald’s and Burger King more often than most, simply because it offered the high number of fat and calories Alex’s diet required. However, his teen years brought bigger challenges, alarming challenges, such as drug resistance, 5-6 week long hospital stays, and school work we could no longer help with; it all offered a frightening glimpse to his future. Where would my son’s path lead? What numbers would govern his future, and would those numbers be limited?

In Alex’s lifetime, cystic fibrosis hasn’t stopped or even slowed down, instead it’s become stronger, even smarter, but so has CF research .  When Alex was diagnosed in 1995, the drug, Pulmozyme, was an infant as well, and TOBI was still only a twinkle in the Foundation’s eye. In fact, the CF gene had only just been discovered a few years earlier.  Still, as the science of cystic fibrosis continues, Alex’s life goes on.

Before leaving for his freshman year in college, Alex and I had a heart to heart, mother/son chat during which, Alex told me he wanted to make a difference.  While unpacking his dorm room, I found his bucket list, and quite simply, it took my breath away as item #1 was to, “Live a life of meaning.” Little did he know that his life means the world to me. 

I don’t know how much Alex thinks about his own mortality. I don’t know what his heart says when he bows his head for those few extra seconds beyond the rest of us at the dinner table, but what I do know is that life goes on and we have the ever evolving science and research to thank for that.  The average life expectancy has more than doubled in Alex’s lifetime, but that’s not enough. The drug pipeline has never witnessed so much promise, but even that’s not enough. We’re not done, and every day there’s another mother and father who hear the echo of that nurse from 1995. We have to do everything we can to support this pipeline of therapy so that bucket lists are replaced with ambitious goals, and life’s dreams are more than just a hope for one more tomorrow. 

Today, in a life of numbers, Alex’s turned 24, but who knows, because I’m here to be sure, that one day we will celebrate zero, the number of lives claimed by cystic fibrosis. One day, one day soon, CF will stand for Cured Forever, and my son’s life will go on.  

Noreen Tarletsky