Category: CF Community

  • 30 Year Old Man with Cystic Fibrosis Qualifies for the Boston Marathon

    After running about 24 miles during a race last summer, Joshua Skampo realized that his time finally might be good enough to qualify for the famed Boston Marathon this April.

    It was June in Charlevoix when the 30-year-old Monroe resident needed to complete the 26-mile race in 3 hours, 5 minutes or less. And nothing — not the aching and burning sensation in his legs or the cystic fibrosis that has limited his lungs since birth — would keep him from his mission.

    I knew I was close,” Mr. Skampo said. “I knew I had about 30 seconds to play with. This was my shot.”

    He crossed the finish line that summer day at 3 hours, 4 minutes, 12 seconds, good for eighth place out of 334 runners. With 48 seconds to spare, Mr. Skampo achieved a goal few runners have accomplished: qualifying for the prestigious Boston Marathon.

    And, remarkably, he did it with only 65 to 70 percent lung function.

    “It’s the biggest marathon around,” Mr. Skampo said. “They don’t let just anybody into it.”

    Cystic fibrosis is an incurable disease that causes thick, sticky mucus to build up in the lungs. It is deadly, and the average lifespan for people with CF who live to adulthood is approximately 37 years.

    “I don’t know what normal breathing feels like,” he said. “It’s like you have pneumonia all the time.”

    But Mr. Skampo refuses to dwell on it or allow it to dictate his life. Running, he said, is therapeutic and actually helps clear his lungs. So he started in middle school and gradually increased his distance to marathons as he got older.

    “It’s what keeps me healthy,” he said. “I have to run today so I can breathe tomorrow.”

    He runs to and from work. He runs in races. He runs for fun. He runs to clear his lungs, but he’s also competitive. That’s why it was important for him to beat the 3 hour, 5 minute mark in Charlevoix last June; he wants to race in Boston.

    His goal is to break the three-hour mark. If he does, Mr. Skampo believes he could finish in the 1,000th place range out of between 23,000 and 25,000 competitors.

    Despite his chronic lung disease, Mr. Skampo doesn’t want special consideration. Although he knows of only one other marathoner with CF — a man in Colorado — he prefers to remain low-key, so he hasn’t researched that type of information. Instead, he focuses on how he can improve his time.

    With only about two months until Boston, Mr. Skampo is in the midst of training. An engineer at Fluid Equipment Development Co. (FEDCO), Mr. Skampo commutes in his running shoes several times a week. He’ll run about 55 to 60 miles a week and is on pace to run 2,600 miles for the year, his most ever. He grew up in Adrian, but he and his wife, Melissa, have lived in Monroe for about five years.

    Although he wears bright fluorescent colors, motorists don’t always see him or pay attention. He had a close call once when a car bumped him, and sometimes he has to endure taunts or items thrown at him. But he endures. Mr. Skampo just keeps going.

    In addition to the qualifier in Charlevoix, Mr. Skampo has run three other marathons in his life. And, on April 15, he will compete in his fifth, which also will be his most important race.

    “(The Boston Marathon) has always been a goal of mine,” he said. “I’m excited. I want to put in the work and do my best. I just want to do my best.”

    Source: Monroe News

    by: Ray Kisonas 

  • Barron helps kids with Cystic Fibrosis Climb the “Poor Man’s” Everest

    Source: Santa Cruz Sentinel (online)

    To attempt to climb the world’s highest mountain in one of its remotest locations — the Himalayas — certain things are required.

    You need a bank roll of money, special government permits and a strong belief in your courage, inner strength and desire to push yourself.

    Considerably less is needed to conquer the “poor man’s Everest,” as professional surfing legend and accomplished artist Shawn “Barney” Barron calls the sport of surfing. With just a simple surfboard, anyone on any given day can explore the peaks of the ocean.

    From the day his neighbor George Harper first pushed him into a wave at Cowell Beach at the tender age of 5, Barron has climbed to the pinnacle of his sport. Perhaps more impressive, the man behind the “air show” concept has safely descended to solid ground.

    Now Barron is on a mission to help others for whom the simple act of surfing may feel like summiting Mount Everest. Using his art and his position as a surf rep for Volcom, he is helping introduce the ocean and its waves to children who suffer from cystic fibrosis.

    Barron works within the 5-year-old Mauli Ola Foundation, which has also enlisted the help of Kelly Slater, Gavin Beschen, Kalani Robb and Sunny Garcia, among others.

    “Barney is selfless and an amazing talent, with a huge heart as well. He has never asked for anything,” said James Dunlop, the executive director of the Mauli Ola Foundation. “Upon our visits to Stanford Hospital, UCSF Medical

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    Center and the Bay Children’s Hospital, art has been a part of our program, in large part due to Barney’s talents. …
    “He is amazing with the children, who just gather around him while he paints for them in the hospital ward. We are blessed to have this man in their midst.”

    Translated from the Hawaiian language, Mauli Ola means “Breath of Life.” It was founded in 2007 by Dunlop, a surfer, and his brother Charles. Together they have led the fight to map the gene mutations responsible for cystic fibrosis at their testing lab, Ambry Genetics, which they started in 1999. Along with searching for a cure, the brothers wanted to help their patients to live their lives to the fullest — now.

    In 2007, they read an article in the New England Journal of Medicine that said cystic fibrosis patients in Australia who lived along the country’s coastline lived longer than their inland counterparts. In a high saline environment, the salt gets into the air passages and lungs and helps break down the mucus, making it easier for cystic fibrosis patients to breathe. In fact, in hospitals, patients are given hypersonic saline treatments, where they breathe in warm salt air and discharge the loosening mucus into a special vest that hangs on their back.

    For the Dunlop brothers, the decision was easy. They had to get the kids surfing and let the ocean provide a natural equivalent of that hospital treatment.

    The word got out to hospitals across the country, and later that year the Dunlops set up a nationwide bus tour with the intent of teaching surfing to sufferers of the genetic disorder from California to Texas and Florida, with stops along the Eastern Seaboard all the way up to New Hampshire.

    Since the bus filled with professional surfers first got rolling, it has made 50 stops and taken more than 800 children into the ocean for some relief from their disease and some fun riding waves with the legends of the sport.

    On May 7, the Mauli Ola Foundation stopped on the Westside for its Santa Cruz Surf Experience Day at Cowell Beach, where Barron learned to surf. There, Barron and his good friend Richard Schmidt took 33 cystic fibrosis patients from Northern California hospitals into the Monterey Bay.

    “That day gave me the best feeling that I have ever felt on the ocean at any time of my life,” Barron said. “The Stenzel twins that have both endured lung transplants literally brought tears to my eyes when I saw them up and riding waves together. It was truly a magical day in my life.”

    Barron said that day gave him more satisfaction that most, which is something coming from a surfer and artist who has experienced plenty of magical days, and climbed many personal mountains.

    From the storied aggressive days with Vince Collier at Steamer Lane, to the shores of Hawaii, Australia, and South Africa, the colorful and majestic surfing career of Barron has led him to tear up the world’s finest and tallest surf breaks, all while becoming a truly unique pioneer of his sport.

    Sponsors came knocking at his door soon after the 17-year-old Barron was featured in a Sunny Miller photo on the cover of Surfer Magazine. In the shot, Barron displayed his original and unique repertoire of surfing maneuvers on a heavy Puerto Escondido wave. Afterward, his climb up his own personal Mount Everest was under way.

    Barron loves the sport of surfing for its free-flowing art form. As an artist, he’s an admirer of an athlete’s individual style, power and grace, displayed differently from one surfer to the next. In particular, Barron reveres 11-time Association of Surfing Professionals world champion Kelly Slater. Barron calls Slater “the single greatest athlete of our time” for how he has adapted to changes in the sport — similar to the quickly changing weather that surrounds most of the planet’s highest peaks — during his reign.

    “No main stream sport — not football or baseball or golf, for that matter — has endured the changes that surfing has,” Barron said. “What Slater is done is the mark of a true champion.”

    Barron is hardly a fan of the traditional surf contests, though. He considers them unfair due to what he calls an “unlevel playing field” of competitors vying for whatever waves Mother Nature may happen to dish out during the allotted time of a surf heat.

    That doesn’t mean Barron hasn’t left an indelible mark on them.

    As the story goes, in the winter of 1995, the always innovative Barron — during a conversation with then Surfing Magazine editor Skip Snead and local big wave surfer Peter Mel — spoke of his idea to introduce skateboarding maneuvers to surfing. Barron brought up the idea knowing full well that it would upset the old-school organizers of the ASP tour.

    “That’s is a brilliant idea!” said Mel, who then suggested, “We can call it the Air Show.”

    The rest is history. Just watch any level of competition today, and you cannot help but notice every surfer from Slater to young groms flying across the face of the waves as part of what started as Barron’s idea.

    “Barney has influenced the surfing world in a huge way. He is unquestionably a pioneer of his craft, and he, with his friends [Jason] Ratboy’ [Collins], [Darryl] Flea’ [Virostko] and [Matt] Rocky’ Rockhold, pushed all of us who surfed to a whole new level,” surf photographer Dave “Nelly” Nelson said. “Barney, is just one of those people who makes you feel good. He has a special quality about him that very few people have, that makes everyone feel that they are one of his best friends. He is a class act.”

    While his neighbor taught him surfing, his neighbor’s wife, Katie Harper, influenced the young Barron’s life by introducing him to the creative arts. Today, they are as much of a part of his life as his surfing.

    Recognizing that he is in the twilight of his surfing career, Barron finds himself more often than not reaching for his brushes and water color. He transfers to the canvas his abstract thoughts and memories collected either while waiting for sets or being held under water by giant waves, or, less grueling, watching the smooth rhythm of the floating kelp and the sea life around him.

    “Everyone is an artist deep down, regardless if you can draw something better than someone else,” Barron said. “In school, we were taught to draw in between the lines. However, I was taught to always go as far as my eyes and mind could see, and I feel my paintings show a limitless depth to their meaning.”

    One of his best friends, Virostko said Barron’s involvement in the Mauli Ola Foundation doesn’t surprise him.

    “He has a certain calm that people just like to be around, though he can get pretty heavy at times, but that is just Barney,” Virostko said. “I am just beginning to figure out the man’s quirks after 30 years of friendship.”

    What is the next mountain for Barron to climb? According to this surfing pioneer, he would like to buy a horse, live off the grid, and grow and tend to a garden, and with his easel, canvas and brush, and continue to abstractly paint his experiences of the mountains he has climbed.

    Neil Pearlberg’s Perfect Rite appears biweekly in the Sentinel. Contact him at sports@santacruzsentinel.com.

    Link to the original article: http://www.santacruzsentinel.com/santacruz/ci_21030444/neil-pearlberg-perfect-rite-barron-helps-kids-cystic

  • CFChef Announces New Recipe Contests for 2012

    CFChef, an online nutrition destination developed to help meet the unique nutritional needs of people living with cystic fibrosis, has announced four themed recipe contests for 2012. CFChef also is asking the community to participate in a survey designed to generate ideas for new program content.

    Many people living with CF are unable to properly digest food due to lack of digestive pancreatic enzymes, which may result in malnutrition. To get enough calories to promote normal weight gain and growth, individuals with CF may need to consume up to two times as many calories as a person without the disease.

    In addition to serving as an educational resource, CFChef aims to raise awareness of the importance of good nutritional habits and provide a place where families, friends and caregivers of people with CF can share recipes and get updated nutrition tips and guidance.

    The 2012 CFChef Challenge recipe contest includes four categories, each with their own deadline:

    • Cookout: Entry deadline June 21, 2012
    • Back-to-School: Entry deadline June 21, 2012
    • Winter Holiday: Entry deadline September 14, 2012
    • Spring Holiday: Entry deadline December 17, 2012

    Individuals living with cystic fibrosis, their families, friends, caregivers and others are invited to submit original recipes for a CF diet, or traditional recipes adapted to a CF diet, online at www.Chef4CF.com.

    Recipes will be judged by a nutritionist and winners will be selected based on nutritional value, ease of preparation and the story behind the recipe. Three winners for each category will receive a digital scale for measuring the nutritional content of food – a great tool for any CF kitchen! Additionally, each winning recipe will be published in the CFChef Online Cookbook.

    Those touched by CF are also encouraged to complete an online survey designed to generate ideas for new program content directly from the CF community! The survey must be completed by July 20, 2012, at www.Chef4CF.com.

    CFChef is sponsored by Abbott, which continues its 25-year commitment by providing resources and support to patients and families touched by CF.

  • New Facebook Tool Allows Members to Share Organ Donor Status

    Following is an announcement made May 1, 2012, by Facebook. To learn how to post your organ donor status on your Facebook timeline, visit the Facebook Help Center.

    By Mark Zuckerberg and Sheryl Sandberg

    Facebook is about connecting and sharing – connecting with your friends, family and communities, and sharing information with them about your life, work, school and interests. On any given day more than half a billion people share billions of stories, updates and photos.

    What has amazed us over the past eight years is how people use these same tools and social dynamics to address important issues and challenges in their communities. Last year in Missouri, Facebook users tracked down and returned treasured mementos to families who thought they’d lost everything in the Joplin tornado. In Japan, people used Facebook to locate family and friends following the 2011 earthquake and tsunami. Smaller acts of kindness happen millions of times a day on Facebook.

    We never could have anticipated that what started as a small network would evolve into such a powerful tool for communication and problem solving. As this happens, we hope to build tools that help people transform the way we all solve worldwide social problems.

    Today, more than 114,000 people in the United States, and millions more around the globe, are waiting for the heart, kidney or liver transplant that will save their lives. Many of those people – an average of 18 people per day – will die waiting, because there simply aren’t enough organ donors to meet the need. Medical experts believe that broader awareness about organ donation could go a long way toward solving this crisis. And we believe that by simply telling people that you’re an organ donor, the power of sharing and connection can play an important role.

    Starting today, you can add that you’re an organ donor to your timeline, and share your story about when, where or why you decided to become a donor. If you’re not already registered with your state or national registry and want to be, you’ll find a link to the official donor registry there as well.

    Facebook’s mission is simple: to make the world more open and connected. But the Facebook community has also shown us that simply through sharing and connecting, the world gets smaller and better. Even one individual can have an outsized impact on the challenges facing another, and on the world. At Facebook, we call that the power of friends.

    To learn more, visit the Facebook Help Center.

  • Documentary on Eva Markvoort to Air May 3 on Oprah Winfrey Network

    A documentary film on Eva Markvoort, a young Canadian woman who made headlines by blogging about her battle with cystic fibrosis and double-lung transplant, will make its U.S. television premiere on May 3.

    Markvoort, who received a double-lung transplant in 2007, blogged at 65_RedRoses about her life, family and experiences. Afer a long battle with transplant rejection, Markvoort died in March 2010 at the age of 25, but not before she recorded an emotional farewell video that drew more than 150,000 views in 24 hours.

    The recent documentary film, titled “65_RedRoses,” is a personal and touching journey that takes an unflinching look into the lives of Markvoort (23 years old when the film was made) and her two online friends who also were battling CF.

    Unable to meet in person because of the spread of infections and super bugs, the girls became each other’s lifelines through the Internet, providing unconditional love, support and understanding long after visiting hours were over. Made at a critical turning point in their lives, the film travels the distance the friends cannot go themselves, capturing the compelling and often heartbreaking realities they face, just trying to take each breath.

    65_RedRoses redefines the traditional scope of documentary film in an electronic age, leaving viewers of a new appreciation of life and the digital world. The film received the Most Popular Canadian Film Award at the Vancouver International Film Festival in 2009; it also was named the Most Popular Canadian Documentary by the National Film Board.

    The documentary will air at 9 p.m. eastern (8 p.m. central) on Thursday, May 3, on the Oprah Winfrey Network. For more information, visit the 65_RedRoses website.

  • April 17 Deadline Approaches for CFCareForward Scholarship

    CFCareForward ScholarshipAbbott has announced it will award two $20,000 scholarships to students with cystic fibrosis to celebrate the 20th anniversary of its CFCareForward Scholarship program.

    The CFCareForward Scholarship honors young adults with CF as they pursue their dreams while living with a chronic disease. The program has provided supplemental educational funding via more than 500 scholarships to students who also are challenged byt he financial burden of their disease, enabling them to achieve their goals of higher education.

    To celebrate the 20th year of the scholarship, two $20,000 scholarships will be awarded to one undergraduate and graduate student for use during the 2012-2013 academic year.

    In addition, 40 students will be awarded $2,500 scholarshisp based on their achievements, essay and creative presentation submitted with the application. These students will then go on to compete in an online public voting contest to be named one of this year’s two Thriving Students.

    Applications will be accepted until April 17, 2012, and are available online now at:  www.CFCareForwardScholarship.com/apply.

  • Help Moganko Meet the Muppets and Boost CF Awareness

    Josh Mogren is on a mission to raise awareness of cystic fibrosis via a puppet named Moganko.

    Mogren, 32, writes a popular blog on life with CF called Welcome to Joshland, and he and Moganko host a series of entertaining YouTube videos that encourage the CF community to stay compliant and healthy. The Boomer Esiason Foundation recently released a podcast featuring Mogren, and he’s also profiled in the CF Stories section on our website.

    But Mogren recently redoubled his efforts to draw attention to CF by launching the Moganko for Cystic Fibrosis Awareness Project. The campaign’s goal is to use the influence of social media to get Moganko to meet the Muppets on their YouTube channel, and, ultimately, to create a collaborative public service announcement focusing on CF.

    Here’s how you can help:

    Mogren notes that a similar campaign resulted in Betty White hosting Saturday Night Live. And when Cookie Monster started a Facebook fan page to host Saturday Night Live, he ended up with more than 100,000 fans and a role in an SNL opening monologue with Jeff Bridges.

    “I dedicate this project to our family and friends who love us unconditionally, the amazing volunteers for making this project a reality, and the CF community—those who are working so hard to live the dream and those that will always be in our hearts,” Mogren said.

  • Abbott Announces Winners of ‘CFChef Challenge’ Recipe Contest

    (Photo: The CFChef Challenge judges – Michael Symon, Ali Christensen, Boomer Esiason and Suzanne Michel)


    Abbott has announced the winners of the CFChef Challenge, a recipe contest to launch CFChef, an online resource developed to help meet the unique nutritional needs of people living with cystic fibrosis (CF).  Four winners were selected from a pool of original recipes and traditional recipes adapted for a CF-focused diet.

    Cystic fibrosis is an inherited chronic disease that affects the lungs and pancreas of approximately 30,000 children and adults in the United States.  Many people living with CF are unable to properly digest food due to lack of digestive pancreatic enzymes, which may result in malnutrition.  To achieve proper nutrition, individuals with CF need to consume more calories than a person without the disease.

    “Because many people living with CF are unable to properly absorb nutrients such as fat, carbohydrate, protein and vitamins, good nutrition is extremely important,” explains Suzanne Michel, a registered dietitian at a leading children’s CF center in Philadelphia.  “Each of the winning recipes from this year’s contest provides innovative, but practical, options to help address the challenges of a CF-focused diet.”

    Winners include: Eleanor Delewski for “Banoffee Stuffed French Toast” (breakfast category); Erin Burns for “Quick and Colorful Chicken Salad” (lunch category); Damian Peterson for “The Deli-licious Burger” (dinner category); and Eric Marten for “No Bake Peanut Butter Bars” (snack category).

    The winning recipes were selected based on nutritional value, ease of preparation, the “story” behind the recipe, and taste.  In addition to being named this year’s “CFChef” in his or her category, each winner received a digital nutritional scale, and has his or her recipe featured in the CFChef Online Cookbook at http://www.Chef4CF.com.  Recipes were judged by a panel of experts, including: Boomer Esiason, CF advocacy leader; Suzanne Michel, CF expert dietitian; Michael Symon, a Food Network “Iron Chef”; and Ali Christensen, “America’s Got Talent” contestant and CF patient.

    “Abbott is committed to providing support for the CF community in a variety of ways,” said Jim Hynd, divisional vice president, Metabolics, GI Care and Dyslipidemia, Abbott.  “The CFChef Challenge and website are new nutrition-focused tools we have developed to help make living with CF more manageable.”

    About CFChef
    CFChef is an Abbott-sponsored online resource to help people living with cystic fibrosis (CF) and their families better understand the unique nutritional needs of people living with the disease.  In addition to serving as an educational resource, CFChef is a place where families, friends and caregivers of people with CF can share recipes.  Visit CFChef at www.Chef4CF.com.

    About Abbott
    Abbott is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals and medical products, including nutritionals, devices and diagnostics.  The company employs nearly 90,000 people and markets its products in more than 130 countries.

    Source: Abbott press release

  • New Book on Ironman Triathletes Highlights Athlete with CF

    In You Are an Ironman: How Six Weekend Warriors Chased Their Dream of Finishing the World’s Toughest Triathlon, bestselling author and New York Times reporter Jacques Steinberg strives to understand the drive six individuals feel to feverishly train and push themselves as hard as they can to be able to be able to complete the world’s most formidable triathlon.

    One of the triathletes profiled in the book is Scott Johnson, who has cystic fibrosis and received a double-lung transplant in 2001.

    Here’s a recent clip from NBC’s “Today” featuring You Are an Ironman and an interview with Johnson:

    Jerry Cahill also interviewed Johnson in September 2007 for a cystic fibrosis podcast. To listen to the podcast, please visit www.jerrycahill.com.

    You Are an Ironman is available on Amazon.com.

  • Fishing and Golf Event in Mexico to Benefit CF, MS

    The CF & MS Fund Foundation will hold its 3rd Annual Cabo Challenge and Golf Tournament from November 10-13 in Mexico’s beautiful Cabo San Lucas. The reservation deadline for this fun and relaxing fundraiser is September 30.

    The Cabo Challenge and Golf Tournament raises funds and awareness for both the Cystic Fibrosis Foundation and the National Multiple Sclerosis Society. All monies raised during the event will help improve the quality of life for people afflicted with these diseases until cures are found.

    The event offers participants their choice of two team competitions: world-class sport fishing in the Cabo Challenge; or a golf tournament at the popular and challenging Cabo Del Sol course. Home base for the weekend event is the Hacienda Del Mar, a five-star resort offering all the amenities. Don’t forget that Cabo San Lucas offers its own fascinating attractions as well!

    For pricing, registration materials and other information, please contact Amanda Camp at acamp@cfmsfund.com or 203.315.7108 / 203.868.4799.