Category: CF Community

  • Congratulations to our 2016 Sacks for CF Recipients!

    Congratulations to the following students who received a 2016 Sacks for CF Scholarship this weekend. 

    Matthew Mitchell        

    Phoenix Children’s

    Boise State University

    Peyton Laffoon

    Valley Childrens Hospital

    Arizona State University

    Nupur Bahl

    Ann & Robert H. Lurie Children’s Hospital of Chicago

    Brown University

    Jacob Haff

    Stony Brook Hospital

    Columbia University

    Zachary Dudley

    Omaha, NE CF Center

    Point University

    Lauren Bombardier

    Boston Children’s Hospital

    Lasell College

    Rachel Burns

    Toledo Children’s Hospital

    Kent State University

    Margaret Hull

    Monmouth Medical Center – Barnabas Health

    University of Richmond

    Robert Haga

    Wake Forest Baptist Medical Center

    University of Virginia

    Brennan Hatfield

    University of Nebraska

    University of Nebraska at Omaha

    Jessica Jilovec

    Children’s Mercy Hospitals and Clinics

    Baylor University

    Holly Beasley

    Wake Forest Baptist Medical Center

    University of North Carolina at Charlotte

    Ambrose Bean

    Dartmouth Hitchcock Clinic

    Maria University

    Caley Gowen

    The Children’s Hospital of Philadelphia

    Temple University

    Lauren Meiss

    UCSF Cystic Fibrosis Center

    University of California

    Diana Wasserman

    UNC Chapel Hill Hospital

    University of North Carolina Chapel Hill

    Katelyn Morris

    Penn State Hershey Medical Center

    University of Alabama

    Camille Niccum

    Carle Champaign, IL

    University of Illinois – Springfield

    Grace Knight

    Children’s Aurora

    Colorado Southern Methodist University

    Scott Buchanan

    Massachusetts General Hospital

    University of Rhode Island

    Faith Stone

    John’s Hopkins Hospital

    West Virginia University

    Dominic Quintana

    Children’s Hospital Colorado

    Colorado School of Mines

    Brian Mccandless

    Dr. Mayholz in Vero Beach

     University of Wyoming

    Olivia Taylor Emory

    Adult Cystic Fibrosis Program

    Auburn University

    Cody Wenger

    Peoria, Illinois

    Western Illinois University

    Caitlyn Havelka

    St.Vincent Hospital Green Bay

    Michigan State University

    Waco Bays

    University of Virginia

    Morehead State University

     

    Brooke Guthrie 

    Rainbow Babies and Children Hospital

    High Point University

     

    Olivia Owens

    University of Cincinnati Medical Center

    Miami University

     

    Kayden Stephenson

    Carey Clinic

    Santa Monica College

  • Life With CF is Not a Sprint by Jerry Cahill

    Our friends at the Cystic Fibrosis Foundation asked our resident CF Ambassador Jerry Cahill to write a guest blog. You can read the full blog here

     

    There has been a lot of progress in treating CF lately with the introduction of ivacaftor (Kalydeco®) and the combination therapy, ivacaftor and lumacaftor (Orkambi™). For some, these CFTR modulator drugs attack the root cause of CF, and the results have been amazing. I think this has led many in the CF community to count on a quick fix for their CF, focusing on their mutation and waiting for a blockbuster drug to give them good health.

    Don’t get me wrong — knowing your CF mutation is important. But it doesn’t have to be the sole focus of life. In fact, it absolutely should not be. If you’re not one of the fortunate ones who benefit from the CFTR modulators available, you have to put the work in every day to maintain your health. In that way, CF is a marathon and not a sprint.

    Much like training for a marathon, life with CF includes continual planning, work and discipline, coupled with twists, turns and opportunities to re-invent yourself.

    I was diagnosed with CF in 1967 at a young age. At the time, not much was known about the disease. My doctors told my parents I wouldn’t live past my 16th birthday. Based on that, my parents believed that the quality of my life was just as important as the quantity of years. We followed the medical protocol of that era, but my parents also wanted me to “be a kid,” which meant roughhousing with my three older brothers and playing on their sports teams. This combination of following my treatments, while doing what I loved, has served me well.

    As I grew up, I realized that there was no quick fix that would result in good health. I followed daily goals to keep my body, mind and spirit healthy, including paying attention to nutrition and exercise and making smart choices in my work and social circles.

    Read the rest of Jerry’s blog here. 

  • Former NFL Great Boomer Esiason Named 2015 Heisman Humanitarian Recipient

    Press Release via the Heisman Trust

    NEW YORK, New York (October 29, 2015) – The Heisman Trophy Trust has named former NFL all-pro quarterback Boomer Esiason as its tenth Heisman Humanitarian award winner in recognition of his valiant effort to fight cystic fibrosis through his Boomer Esiason Foundation. Esiason will be honored at the 81st Annual Heisman Memorial Trophy Gala on December 14 at the New York Marriott Marquis.

    In addition to honoring the outstanding college football player of the year, the Heisman Trust’s mission is to provide opportunities for disadvantaged and afflicted children and families in communities across the country. Since the Trust assumed stewardship of the Heisman Trophy in 2002, it has donated over eight million dollars to more than two hundred (200) charities throughout the United States. The Trust established the Heisman Humanitarian Award in 2006 as an extension of those charitable endeavors, looking to recognize figures in the world of sports that give significantly of themselves to improve the lives of others.

    Esiason is one of the most successful quarterbacks in NFL history. Drafted out of Maryland by Cincinnati in the second round of the 1984 draft, Esiason was named a four-time pro bowler, the 1988 NFL Most Valuable Player and the Walter Payton Man of the Year in 1995 before retiring after the 1997 season. He guided the Bengals to the 1989 Super Bowl and finished his career with over 37,000 passing yards and 247 touchdown passes. He has been a color analyst during his post-football career, working on every Super Bowl since 2000.
     
    His life changed back in 1993 when, while at mini-camp for the New York Jets that year, Esiason was notified that his two-year-old son, Gunnar, was taken to the hospital with breathing difficulties. The youngster was soon diagnosed with cystic fibrosis, a disease of the respiratory and digestive systems. The Boomer Esiason Foundation (BEF) was formed soon afterward to fund research to find a cure for the disease. “I’m going to be the biggest enemy this disease has ever had,” Boomer said.
     
    In its quest to find that cure, the BEF aims to bring together the brightest researchers and scientists while also providing scholarships, transplant grants, hospital grants, education and increased awareness of cystic fibrosis. The foundation educates people from all walks of life to become committed participants in the ongoing battle against CF and provides students and hospital staffs with the financial resources and educational tools they need to prepare for the challenges of the disease. BEF annually awards the largest number of scholarships to CF students in the country. The foundation, located in New York City, has raised in excess of $115 million over its life span.
      

    Gunnar Esiason is now a 24-year-old graduate of Boston College. He undergoes daily treatments and takes cystic fibrosis medications, but he hasn’t let his condition hold him back–he was a quarterback for his high school football team, played forward on his ice hockey team and now coaches high school football and hockey. 

    “The Trust is proud to honor Boomer Esiason as our Heisman Humanitarian this year. Over the past 20 plus years, Boomer has worked tirelessly to combat Cystic Fibrosis: creating awareness and educating about the disease, assisting those that suffer and working to find a cure.” said William J. Dockery, Heisman Trophy Trust President. “His work through the Boomer Esiason Foundation has given hope to thousands that, one day, we will find a cure for this horrible disease.”
     
    “Boomer epitomizes what the Heisman Humanitarian Award is all about, which is to recognize and honor individuals who give selflessly of themselves to assist underserved segments of our society, while also encouraging others to emulate these fine individuals.”

    “I am deeply honored and humbled to be receiving the Heisman Humanitarian award.” stated Esiason. “When I started this fight against cystic fibrosis over 20 years ago, I never could have predicted the amazing impact my family and my team at BEF would have. We will continue to fight tirelessly to make CF stand for cure found; to make sure that all CF patients receive the care and support they deserve.”

    Esiason joins an incredible group of former Heisman Humanitarian winners, including: Joey Cheek, Olympic speed skating gold medalist, for his dedication and contributions to the children of Darfur; George Martin, former defensive end of The New York Giants, who walked across America to raise funds for rescue and recovery workers at Ground Zero after 9/11; Pat LaFontaine, former NHL star who, through his Companions in Courage Foundation,  builds interactive playrooms in Children’s hospitals to keep young patients connected to family and friends; Mia Hamm, world-renowned soccer player; who raises funds and awareness for families needing marrow or cord blood transplants and continues to grow opportunities for young women in sports; Warrick Dunn, former NFL running back, who has provided homes for single parent families to honor his mother’s memory; Marty Lyons, University of Alabama and New York Jets defensive tackle, whose foundation fulfills the special wishes of children with terminal or life threatening illness; Jeff Gordon, four-time NASCAR Cup Series champion and founder of the Jeff Gordon Children’s Foundation, which supports children battling cancer; David Robinson, former San Antonio Spurs center, who has dedicated himself to helping children and families in need in the San Antonio community; and Joe Torre, who works to end the cycle of domestic violence through his Safe At Home foundation.

    Tickets to the 81st Annual Heisman Memorial Trophy Gala are available at www.Heisman.com. The Heisman Memorial Trophy Dinner is the only event during Heisman Weekend that is open to the public.

     

    About the Heisman Trophy Trust
    The Heisman Memorial Trophy annually recognizes the outstanding college football player whose performance best exhibits the pursuit of excellence with integrity.  Winners epitomize great ability combined with diligence, perseverance, and hard work.   The Heisman Trophy Trust ensures the continuation and integrity of this award.  The Trust, furthermore, has a charitable mission to support amateur athletics and to provide greater opportunities to the youth of our country.   Our goal through these charitable endeavors is for the Heisman Trophy to symbolize the fostering of a sense of community responsibility and service to our youth, especially those disadvantaged or afflicted.
     

    About the Boomer Esiason Foundation
    The Boomer Esiason Foundation supports the CF community in the here and now in a number of ways; including scholarships, transplant grants, exercise programs, and educational programs (podcasts, wind sprints, education days) as well as donating money to research.

  • BEF’s ‘Bike To Breathe’ Encourages Cystic Foundation Patients To Stay Active via CBS

    SOURCE via CBS

    NEW YORK (CBSNewYork) — A challenging bike ride ended in New York on Thursday. The 500 mile journey was completed by two cystic fibrosis patients.

    “Staying active with cystic fibrosis really keeps your lungs clear, the biggest problem with CF is the lungs get clogged up with mucus, so exercise is really important,” Jerry Cahill told TV 10/55’s Meg Baker.

    Cahill had a double lung transplant 3-and-a-half years ago, and just finished a 500 mile bike ride from Bar Harbor, Maine to New York-Presbyterian/Columbia in the name of Cystic Fibrosis.

    The Boomer Esiason Foundation’s ‘Bike To Breathe’ event encourages people with cystic fibrosis or CF, and their families to stay active and exercise. “Back in 1993, my son Gunner was diagnosed. Here we are 20 years later and we are celebrating accomplishments of Jerry Cahill, 56-year-old, completed his second 500 mile bike ride,” Boomer said.

    Cahill’s riding partner Emily Schaller, 33, started cycling, running, and exercising in 2007 because she was sick of being sick.

    “Raised awareness for patients. Everyone along the way shared our stories and raised some funds,” Schaller said. The duo was surrounded by their doctors at the finish line.

    “Promoting sports is a significant part of CF care,” Dr. Selim Arcasoy said. Dr. Joshua Sonett performed Cahill’s double transplant and a few months later ran a 5k race with him.

    “Jerry is a great example of Boomer’s program for CF. Keeping the body as strong around bad lungs, as you can to keep yourself going. A model you can use for any disease, keep your bodystrong,” Dr. Sonett said.

    “Making people aware they can get out, do something, don’t have to run a marathon, you can bike, walk, move your body it’s really important,” Cahill said. Cahill talks about keeping his body strong, but said his heart is the strongest in bringing awareness to the cause.

    So far, the Bike To Breathe event has raised $200,000 their goal is to raise $300,000.

  • Working With Your CF Care Team: How to Move Up to Adult Care

    About This Program

    This article is for young people who have cystic fibrosis (CF). The goal is to help you prepare for a successful move to adult care.

    It will cover:

    • How will your care be different when you’re an adult?
    • What to do to make the switch to adult care
    • How to make the change as easy as possible
    • How to tackle issues that come up when you leave home

    Click here to learn more. 

  • Nutek Disposables, Inc. Issues Alert Due to Potential Bacteria in Baby Wipes via FDA

    SOURCE – FDA.GOV

    Recall — Firm Press Release

    FDA posts press releases and other notices of recalls and market withdrawals from the firms involved as a service to consumers, the media, and other interested parties. FDA does not endorse either the product or the company.

    Nutek Disposables, Inc. Issues Alert Due to Potential Bacteria in Baby Wipes

    Contact:
    Consumer:
    1-855-646-4351

    Media: 
    Sean Wood
    1-212-445-8310
    swood@webershandwick.com

    Hallie Bozzi
    1-212-445-8276
    hbozzi@webershandwick.com

    FOR IMMEDIATE RELEASE — Oct. 25, 2014 — MCELHATTAN, PA — Nutek Disposables, Inc. of McElhattan, PA has initiated a nationwide voluntary product recall at the retail level of all lots of baby wipes that it manufactured under the brand names Cuties, Diapers.com, Femtex, Fred’s, Kidgets, Member’s Mark, Simply Right, Sunny Smiles, Tender Touch, and Well Beginnings, because some packages may contain bacteria. These wipes were distributed by Nutek prior to October 21, 2014 to the following retail stores: Walgreens, Sam’s Club, Family Dollar, Fred’s, and Diapers.com.

    After receiving a small number of complaints of odor and discoloration, Nutek conducted microbial testing that showed the presence of a bacteria, called Burkholderia cepacia (B. cepacia), in some of these products. Soon after, on October 3, 2014 the company initiated a voluntary withdrawal of lots that had tested positive for the bacteria, as well as other baby wipes in the surrounding time frame. After some additional lots were tested, as a precautionary measure, Nutek believed it was a prudent decision to withdraw all its baby wipe products.

    B. cepacia poses little medical risk to healthy people. However, people who have certain health problems like weakened immune systems or chronic lung diseases, particularly cystic fibrosis, may be more susceptible to infections with B. cepacia. If you believe you have a weakened immune system or chronic lung disease and you have used one of the affected wipe products, you should call your doctor promptly for medical advice.

    As of October 3, 2014, the date of the original withdrawal, the company had received only one report of irritation. Numerous reports of complaints have since been received by the company that include rash, irritation, infections, fever, gastro-intestinal issues, and respiratory issues, though these reports have not been confirmed to be related to the use of these products.

    The company has not identified the cause of the problem, but is continuing to investigate. In the interim, Nutek has stopped shipping baby wipes manufactured at the facility.

    Nutek takes the safety of consumers and the quality of its products very seriously and is taking all appropriate steps to address the issue and ensure this does not happen again.

    The company is working with the U.S. Food & Drug Administration and the affected retailers and distributors throughout this process to address the issue.

    Consumers who have purchased this product can return it to the place of purchase for a full refund. Consumers with questions may contact the company at 1-855-646-4351, Monday through Friday, 10 AM – 4 PM EDT.

    PLEASE FIND THE FULL PRESS RELEASE HERE. 

  • Gunnar Esiason: Calling the shots via Sports Illustrated

    Via Sports Illustrated, MMQB

    Article by: Emily Kaplan

     

    Gunnar Esiason, the son of former NFL quarterback Boomer Esiason, is well known for his lifelong battle with cystic fibrosis. But a high school football team in Long Island simply knows him as a coach.

    LOCUST VALLEY, N.Y. — Here, on the manicured campus of a Quaker school in central Long Island, a sleepy Thursday afternoon comes alive moments after the opening kickoff of a football game. Cyrus Holder, a wideout at Friends Academy, collects the end-over-end kick, evades a few would-be tacklers and bolts down the left sideline.

    “Go Cy, go!” the head coach shouts.

    Holder slips through a scrum and sprints toward open field.

    “Wooo!” the quarterback hollers.

    Touchdown: 80 yards.

    The home sideline erupts, everyone roaring and fist-pumping and jumping up and down. Everyone, that is, except the offensive coordinator. He coolly raises his right hand and extends his index and middle fingers, letting everyone know they’re going for two. Moments later, a sweep right makes it 8-0. As the cheering resumes, the coordinator glances down at his play-call sheet and can’t help but crack a slight grin.

    America has seen that smile before.

    It belongs to Gunnar Esiason, son of Boomer, who in October 1993 appeared on the cover of Sports Illustrated as a 2½-year-old with honey butter blonde hair and Chiclet teeth. Swimming in an oversized Jets jersey, he sat on his father’s shoulders, both of them smiling above the headline: “A Quarterback’s Crusade: Boomer Esiason and his son, Gunnar, battle a deadly disease.”

    Since before he could talk, Gunnar has lived with cystic fibrosis, a rare genetic disorder that causes the lungs to fill with mucus. “Imagine having bronchitis,” he says. “All day, every day.” When he was diagnosed, life expectancy ranged from the late teens to the mid-20s. But look at him all grown up. The blonde locks have morphed into shaggy brown curls, and he’s now a 23-year-old high school football coach who is impossible to miss, standing almost as tall as Boomer at 6’ 3”.

    Coaching football never was part of Gunnar’s master plan, and the growing pains he’s endured the past season and a half will be reinforced this afternoon: The two-point conversion is Friends’ last highlight in what will be a 34-8 loss to Clark High School from nearby Westbury. But at that moment, his two fingers held skyward in the crisp October air, Gunnar Esiason’s confidence is so unmistakable that you forget about the battle he’s still waging.

    * * *

    Gunnar is an excellent writer. An English major at Boston College, he keeps an enlightening, and candid, blog about living with CF. “When I’m not feeling so hot, like this past week, my mucus feels like yogurt,” he wrote in August. In another post, he published a selfie in which his shirt is lifted to reveal an abdomen marked by surgical scars and tubing inserted above the navel. The “G-Tube,” which can give him up to 5,000 calories a day, is a relatively new gadget that Gunnar picked up two years ago after a bout with pancreatitis. “If I took my shirt off, unfortunately you wouldn’t see a chiseled movie star’s body,” he wrote on July 8. “I’m not really looking like the guys from 300 these days.”

    Twice a day, after waking up and before going to sleep, Gunnar straps on a black vest that looks like a life preserver to give himself two-hour steam mist treatments to open his lungs. His doctors aren’t thrilled about him coaching. They haven’t banned it, but being around kids isn’t ideal, especially during cold and flu season. Gunnar also coaches hockey at Friends Academy, and he doesn’t get home until 10 p.m. on nights when he goes to the rink.

    “I could literally be sitting on my couch all day just waiting to do treatments, or I could be going out and living my life,” says Gunnar. “Which would you pick?”

    “We want Gunnar to find a beautiful girl, to get married, have his own family,” Boomer says. “The reality is that there are going to be significant fights ahead.”

    The oldest of the Esiasons’ two children—sister Sydney is a senior at BC—Gunnar keeps living the way he always has: doing what he wants, but with precautions. He sometimes wears a surgical mask in the football team’s germ-infested locker room, and sometimes would be always if his mom, Cheryl, got her way. He sometimes ditches the team bus and drives his car to away games; he carries prescription hand sanitizer everywhere.

    “I forget about everything he’s going through because he just seems so normal,” says Corey Goldglit, the starting quarterback at Friends. “Then he’ll have this big cough, or he’ll have to spit out phlegm, and it’s like, ‘Oh, right.’ ”

    A CF patient’s immune system is inherently weak, so even a common cold can cause major complications. The summer of 2013 was especially bad for Gunnar, who had just graduated from BC and was hoping to go to law school. But he kept shuffling in and out of the hospital as doctors kept injecting IV after IV trying to figure out why he couldn’t stay hydrated or maintain his weight. After two months of treatment, he was in no shape to study for the LSATs.

    As his strength returned, Gunnar became like most recent grads, living at home and trying to find a direction. Then his high school called. “We had an opening,” Friends athletic director Alan Quackenbush says. “And adding Gunnar felt like a natural fit.”

    Gunnar had coached youth hockey before, and he had a knack with kids. One of his players was the son of four-time NHL all-star and current Islanders assistant coach Doug Weight, who was so impressed with Gunnar that he asked him to coach his son’s travel team, too. Football, though, was a new venture.

    Gunnar wasn’t worried about forming relationships with players—his age automatically qualifies him for a cool-big-brother role—but he wanted to brush up on the X’s and O’s. Gunnar had been the backup quarterback at Friends; catching a bug sidelined him a few times, but he otherwise played with no limitations. (A favorite story Quackenbush likes to tell: After sprinting during a particularly humid preseason practice, one player gasped for air. Gunnar turned to his teammate and quipped, “Now you know how I feel every day.”)

    “I’ve always loved being a part of a team,” Gunnar says. “Unfortunately I wasn’t given the body to be a super athlete.” And so a reliable teammate strived to be a remarkable coach.

    Gunnar fell in love with the offense Colin Kaepernick was running with the 49ers. “That’s what I wanted to emulate,” he says. But he quickly realized that San Francisco’s read-option and blocking schemes might be too complex, so he scrolled back to Kaepernick’s college career. “I can’t tell you how many hours I spent watching YouTube videos of Nevada,” he says. “Hours upon hours upon hours.”

    Gunnar copied the plays, verbatim, and implemented them at Friends. But execution was a whole other issue. “Plays can always work on paper,” says head coach Ron Baskind, now in his 28th season. “But you have to make them work on people—and with kids, you never know what you’re going to get.”

    “I’d come home so frustrated,” Gunnar says. “Why can’t they figure it out? My dad was like, ‘Well, now you see how coaches feel in the NFL when the players are getting paid and they still don’t get it.”

    To help Gunnar regroup, Boomer pulled out his Bengals playbooks from 1988—they were literally dusty—and together they began flipping through the pages. Boomer was league MVP that season, throwing for 3,572 yards and 28 touchdowns. It was the year the Ickey Shuffle became a pop-culture sensation, and the year the Bengals’ quick-passing, no-huddle offense terrorized defenses to the tune of a 12-4 record and a Super Bowl berth. To Gunnar, all the plays looked like a bunch of gibberish.

    “I had no idea what I was looking at,” he says. “So I had to decipher it, simplify it and translate it to high school.”

    Gunnar gave a traditional Power-I offense a touch of the modern by implementing the pistol formation, among other wrinkles. (Taylor Ballantyne/The MMQB)
    Friends Academy, for as long as anyone can remember, has relied on the Power-I. “It’s a great tradition,” Gunnar says. “But when I joined the staff last season, I tried to add a new wrinkle.” And so his play-call sheet is sprinkled with ambition: the pistol formation, short West Coast-style passes, and plays taken straight from his four-time Pro Bowl father’s NFL playbooks. The biggest challenge was teaching it to teenagers, which meant simplifying the terminology.

    “A play in their book was crazy numbers and words, literally like a whole sentence,” Gunnar says. “I made ours easy. The routes are even in the name of our play.” One play, for example, is called Spread Right Layers. It’s a four-wide receiver set with two layers of routes—the deepest being a post route to the right.

    Gunnar also minimized personnel groups. Actually, there’s really only one personnel group. Because of the school’s size (roughly 95 students per grade) only 22 players dressed for last Thursday’s game. A handful suffered injuries during the game, and by the fourth quarter only four weren’t playing every down—offense, defense and special teams. “We make do with what we have,” Gunnar says.

    With patience and revised expectations, Friends Academy has made it work. A few weeks ago, Gunnar noticed an opponent was only covering his top receiver. “It was kind of idiotic,” he says. So he called an audible from the sideline. A quick two-yard slant became a deep ball that Goldglit threw for a 65-yard touchdown. The play had hints of Boomer: a bit of improvisation, a bit of magic, a bomb of a throw.

    “Any time one of my plays work, it’s the best feeling,” Gunnar says. “It’s like, I did that?”

    Entering last Thursday’s game, Goldglit was the leading passer in the county and Holder, the junior who ran back the opening kickoff, was the leading receiver.

    “I knew Gunnar would be impacted positively by the whole experience, I didn’t realize it would totally engulf him,” Boomer says. “But if you know coaches, once they get into it, and have some success with it and see the kids are responding—it’s addictive. He’s in his second year of coaching and he’s insane about it.

    “It’s a wonderfully inspiring story. But it’s also a painful and frustrating story because you have to remember what he’s dealing with.”

    * * *

    Sports Illustrated has checked in on the Esiasons over the years, as the family’s foundation grew (it has raised more than $100 million for CF research), as Gunnar reached adolescent milestones (he threw two varsity touchdowns), and as science progressed (the average lifespan for CF patients who reach adulthood is now 37).

    If you didn’t know about Gunnar’s battle with CF, he’d strike you as just a regular guy. He has a disarmingly affable personality, answering a reporter’s cold call with a warm “Hey there! What’s going on?” He keeps his facial hair scruffy; he loves his Raptor Truck; he adores his mom’s mashed potatoes; he tweets pop culture references—@G17Esiason: I want to make a Lorde joke because the Royals won… But I’m still upset about her taking the rock category at whatever award show that was—and he plays in a weekend hockey league with his father. “We can’t play on the same line anymore,” Boomer says. “Our styles are way to different. I yelled at him too much.”

    It’s a strange thing, asking a 23-year-old about his mortality. But Gunnar understands that life with CF is tenuous. Sitting on a bench after the game, he ponders his fate for the briefest of moments.

    The Esiasons have always stressed a carpe diem attitude, a philosophy of understanding that Gunnar has cystic fibrosis but not letting CF define him. “What I want for him is what every parent wants for their kid, but maybe even more so,” Boomer says. “We want Gunnar to find a beautiful girl, to get married, have his own family. He’ll be a great dad—he’ll be an insane dad. The reality is that there are going to be significant fights ahead. We never really verbalize it, but we know it.”

    It’s a strange thing, asking a 23-year-old about his mortality. But Gunnar understands that life with CF is tenuous. Sitting on a bench after the game, he ponders his fate for the briefest of moments. How long will you live? You can tell he has considered this question before, only to drop the whole thing and let it be. “Really, I have no idea,” he says, speaking with no emotion and perfect clarity. “I don’t even know what my life expectancy is supposed to be now. If you think about things like that, that’s when you lose yourself. Every day I wake up, every day I can live is a victory.”

    It puts the football losses in perspective. Goldglit was among the players lost to injury last Thursday, and losing his starting quarterback limited Gunnar’s creativity and the team’s ability to execute. The Quakers fell to 1-4. But there was Gunnar an hour after the final whistle, chatting with Goldglit’s parents and throwing his arm around Godlelit as he joked about the quarterback’s pink socks.

    “The two of them text all the time,” Goldglit’s mom, Lisa, says. “They think it’s all about football. I know they are both getting so much more out of it.”

    On the field, Gunnar is an easy-going, personable coach. But the CF patient who wakes up every morning isn’t as composed. Bacteria swarm in his lungs all night. He’s disheveled, headachy and has a throat full of phlegm. He has to find the strength to get up, to strap on his vest and to take on the day.

    The best part of it, no doubt, is football practice.

  • CF Doesn’t have to Define You via CNN Impact Your World

    SOURCE: CNN

    By Gunnar Esiason , Special to CNN
    updated 11:03 AM EDT, Mon August 18, 2014 CNN.com

    [Editor’s note: Gunnar Esiason, son of retired Super Bowl quarterback Boomer Esiason, has cystic fibrosis. His dad founded the Boomer Esiason Foundation to fight and find a cure for the life-threatening lung and digestive disease. In over two decades, the charity has raised more than $100 million. Now a Boston College graduate, Gunnar works as a CF advocate and program director at the non-profit that was founded to save his life and the lives of other CF patients. The views expressed are solely those of the author.]

    (CNN) — Breathe in.

    Breathe out.

    Simple, right? The first thing anyone does in this world is take a breath of air — it should be effortless. For me, and nearly 70,000 people across the world like me, it’s not so easy. I have cystic fibrosis (CF) and I have never been able to take a full breath of air.

    Every day for 23 years, it has been a struggle to breathe. I often get asked what CF is, or what it is like to live with CF. There is no one true answer. The best I can come up with is, imagine living every single day with something like bronchitis, or, a little more simply put, imagine having to breathe through a straw all day, every day.

    The mucus that fills my lungs and traps some of the most deadly bacteria imaginable as a result of my genetic defect has always been inside me. So, how do I live with it? I never feel bad for myself. When it comes to living with a chronic illness, self-pity, in my opinion, is the root cause of failure. I was dealt a certain hand of cards at birth and I am making the very best of it. It’s not anyone’s fault I have CF. It isn’t a curse. It isn’t bad luck. It just happened.

    I have every reason in the world to stay in bed all day and feel sorry for myself, but I don’t. I get up and carry out my day like most people. I graduated college in four years, have a job and take care of all of my responsibilities. I don’t hold anything back.

    Between all the inhaled treatments, mucus clearing therapies and the 80 pills or so that I ingest every day, the amount of time I spend taking care of myself is the equivalent of a full time job … and that’s only when I

    am healthy.

    The physical treatments themselves may only take about two to three hours total, but every single decision I make throughout the day has some impact on my health, one way or another. Am I going out with my friends on a Friday night? Is it OK to skip a treatment because I am too tired? Can I go away for the weekend, or am I starting to feel sick? Questions like these constantly go through my head.

    As far as I am concerned, this is all just a part of my life. I don’t know any other way.

    When it comes down to it, I don’t have any complaints; I think I live a great life. I have the best friends I could ever ask for. I have an amazing sister. I had the best four years of my life at Boston College. I am able to work a few jobs and I was an athlete growing up. (I might still consider myself an athlete, but the jury is still out on that decision!)

    There is a difference between being alive, and truly living. In 70 years, when I am 93 years old, I want to be able to look back on my life and know that I have an enormous collection of unforgettable experiences. I think the experiences and memories we create for ourselves are what define our personalities. I want people to say, “Wow. That guy Gunnar Esiason has lived a great life.”

    I realize I am still pretty young, but I like to think that I have a pretty good understanding about the value of life and how fragile it can be. I could be having the greatest day of my life one day, but the next I could be hunched over coughing up blood. It is just the reality of the disease I live with. Every day, good or bad, has shaped who I am.

    The bottom line, though, is that cystic fibrosis has taught me how to be resilient. I don’t take no for an answer and I know I can be whatever I want to be. I was sort of born into a unique situation. Because my dad’s a national figure and my parents’ were willing to take on CF in a public way, I have been given the chance to make a difference.

    Some may call me the poster boy for cystic fibrosis, but I don’t think anyone should have that title. We’re all in this together. Every family that has to carry the CF burden is in this fight. All I want to do is give CF patients a voice, so that one day we aren’t dealing with the pain that comes along with the disease. One day, it will be behind us.

    Breathe in.

    Breathe out.

    Earn the air.

    © 2014 Cable News Network. Turner Broadcasting System, Inc. All Rights Reserved.

    SOURCE: CNN

  • Gunnar Esiason Blogs about Living with CF

    Our very own, Gunnar Esiason, launched a blog to share his story of living with cystic fibrosis.

    “I want to use this blog to share some of my experiences so that hopefully when you, whoever you are, read this you can see the world as I see it. You can appreciate life as a whole. I want you to laugh and have fun while you read, I do not want you to feel sorry for me, or feel like the world is some cruel unfair place. The truth of the matter is that I was dealt a certain hand of cards, and I am making the best of it.” – Gunnar

    www.gunnaresiason.com

  • New Comics: Adventures in a Life with CF, Brought to You by Novartis

    I GET BY WITH A LITTLE HELP FROM MY FRIENDS

    Feeling alone doesn’t mean you’re in it alone

     

    Meghan cultures Pseudomonas aeruginosa (Pa) and ends up in the hospital.

    Something to Talk About: Use the following questions to think about Meghan’s story and whether it relates to you, a loved one, or a friend. 

    • Have you been diagnosed with Pseudomonas aeruginosa (Pa) lung infection? If so, do you remember how you felt when your doctor told you about this diagnosis? If not, have you discussed this “bug” with your physician? 
    • In the hospital, it really lifted Meghan’s spirits when she was able to speak with Christopher about her diagnosis. Do you have a friend you can talk to when you feel down or alone? 
    • Do you have someone in your life to act as a “CF mentor” other than a family member or peer?

     


     

     

     

    TRAVELING MAN

    Hitting the road shouldn’t mean leaving your health in the dust 

     

    Christopher wants a vacation…from his CF.

    Something to Talk About: Use the following questions to think about Christopher’s story and whether it relates to you, a loved one or a friend.

    • Sometimes we tend to fight with the people we care about most. Have you ever gotten in a heated argument with a loved one about sticking to your treatment regimen while on vacation? What is the hardest thing about sticking to your treatments?
    • Do your friends know about your CF? When do you feel it is the right time to disclose this information? Has your friend’s understanding of CF helped you?
    • What does your “CF travel kit” look like? Have you and your CF Care Team ever had a discussion about a specific plan for when you travel?

     


    Want more Christopher and Meghan?

    The fictional characters Christopher Morgan and Meghan Powell were created by Novartis as an educational resource for the CF community. The storylines for the three original movies are inspired by interviews with people with CF, their healthcare providers, caregivers and friends.

    You can watch the three original films on CFvoice.com:


     

    BROUGHT TO YOU BY                  

     


    10/13       XCF-1294047