Category: CF News

Every day, researchers around the world come one step closer to discovering a cure for cystic fibrosis. In the meantime, the CF drug “pipeline” ensures therapies are moving from the laboratory to the marketplace. We keep an eye on medical news sources from around the world and report on these developments as they occur.

  • 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.

  • Troupe with CF Dancer Finishes in Second Place on America’s Got Talent

    The Boomer Esiason Foundation congratulates the Rocky Mountain Silhouettes — and team member Kelsie, who has cystic fibrosis — on their second-place finish in the popular “America’s Got Talent” television competition.

    The Rocky Mountain Silhouettes are 42 kids from ages 3 to 19 that are technically trained in every style of dance plus acting, singing and tumbling. They are a part of the Rocky Mountain School of Dance, an award winning competitive performing arts studio from Denver, Colo. Team member Kelsie, 17, is yet another example of how people with CF are living, breathing and succeeding despite the disease.

    Check out the amazing performance of the Silhouettes in the America’s Got Talent finals earlier this week …

  • Nick News Special Focuses on Organ Donation, Features Teen with CF

    Nick News with Linda Ellerbee hears from kids and families who have been affected by organ donation in the half-hour special, “A Gift of Life,” premiering Sunday, Sept. 18, at 9 p.m. (ET/PT) on Nickelodeon. Beginning Monday, Sept. 19, the special will be available on Nick.com and on iTunes as a free podcast.

    There are more than 2,000 kids in the U.S. waiting for organ transplants because their own organs are failing. The success rate for people who have received donated organs is 80 to 90 percent, but the demand is higher than the number of donors.

    “Organ donation isn’t an easy subject to discuss with family,” said Ellerbee. “But kids aren’t only the recipients. They are also donors, so it’s important for families to educate themselves on the topic. There may be an opportunity to save a life or even lives.”

    Tyler, 17, from Grand Prairie, Texas, was born with cystic fibrosis and has been waiting seven months for a double lung and liver transplant. The hospital will alert him of a potential donor via a pager, which he checks every 5 to 10 minutes. “I’m fighting every day,” says Tyler. “I’m not a quitter. I have big plans…I’m going to be sad because somebody else’s organs that are inside me that passed away. But then again, it’s giving me an opportunity to live.” Tyler recently launched an e-book to educate multicultural audiences about organ donation and coping with serious illness.

    Madison, 13, from Roanoke, Va., was healthy until she noticed her eyes had turned yellow. She was diagnosed with liver failure, and the only way for her to stay alive was a liver transplant. Her older brother, Jordan, 19, was a match to be a living donor, someone who can give part of an organ that regenerates while still functioning as they did before. Jordan says, “I was proud of myself. I gave my liver to one of the closest people to me, and I’d do it again in a heartbeat.”

    “My donor’s name was Johnny Hernandez,” says Michael, 14, from Oakland, Calif. “He died at the age of 18 in a motorcycle accident.” In addition to sharing an interest in the Oakland Raiders, playing the same position in Pop Warner football and enjoying chocolate chip peanut butter ice cream, Michael now has Johnny’s liver. Michael and his mom now pay the gift forward with Mikey’s Meals, an organization they started to feed the homeless in Oakland, which has now fed over 4,000 people in the area.

    After watching the movie, Seven Pounds, Santos, then 16, told his family he wanted to be an organ donor. He passed away two weeks later, and his mother honored his wish by donating his organs, saving four people’s lives. His sister, Kassandra, says, “It’s very sad losing a brother, a son, but you know there’s a good feeling that you gave the recipient a second chance of life and they’re living because of the organs that he donated.”

    Nick News, produced by Lucky Duck Productions, is now in its 20th year and is the longest-running kids’ news show in television history. It has built its reputation on the respectful and direct way it speaks to kids about the important issues of the day. Over the years, Nick News has received more than 21 Emmy nominations and recently won its ninth Emmy Award for Under the Influence: Kids of Alcoholics in the category of Outstanding Children’s Nonfiction Program.

  • CF Chef Recipe Contest Deadline is September 28

    The deadline for Abbott’s CFChef Challenge recipe contest is September 28. 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.

    CFChef is a new online nutrition destination developed to help meet the unique nutritional needs of people living with cystic fibrosis. In addition to serving as an online nutrition resource, the CFChef program will allow those touched by CF to share and receive support through recipes and meal tips.

    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.

    “When cooking for someone with CF, you have to rethink the nutrition ‘rules’ that apply to the general population. ‘Low fat, low cal’ is not the goal,” explains Suzanne Michel, a registered dietitian at a leading children’s CF center in Philadelphia. “In my 30 years of working with people with CF, I’ve learned that mealtimes can be challenging for families. The CFChef resource addresses those needs, providing useful nutritional information, recipes and tips for people living with CF from infancy to adulthood.”

    Submissions for the CFChef Challenge recipe contest will be accepted in four categories: breakfast, lunch, dinner and snack. The top recipes will be 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.

    “As a parent of a college-aged son with cystic fibrosis, I know how important nutrition is,” says Boomer Esiason, former NFL quarterback and CF advocate. “The CFChef program offers the opportunity for the CF community to connect and share creative recipes while receiving educational information about nutrition.” 

  • Dancer With CF Part of Troupe in Finals of ‘America’s Got Talent’

    Kelsie - courtesy of Rocky Mountain SilhouettesAn exciting performance troupe comprised of young dancers, actors and tumblers — including one with cystic fibrosis — last night made it into the finals of the popular television show “America’s Got Talent.”

    The Rocky Mountain Silhouettes are 42 kids from ages 3 to 19 that are technically trained in every style of dance plus acting, singing and tumbling. They are a part of the Rocky Mountain School of Dance, an award winning competitive performing arts studio from Denver, Colo.

    Silhouettes member Kelsie, 17, has to deal with some challenges not faced by other members of the troupe. According to Kelsie’s biography on the Silhouettes website, she dances 30 hours a week and maintains a 4.0 GPA as a high school senior. She also has cystic fibrosis. Kelsie’s favorite phrase is “I have CF, CF doesn’t have me!”

    Kelsie was diagnosed with cystic fibrosis at one month old. She works every day to stay healthy. She has an intensive medical regime that includes a minimum of two breathing treatments a day. The team at the Denver Children’s Hospital has worked with Kelsie throughout her life to make sure that her dance is a priority and a significant piece of her treatment plan. It has been said of Kelsie that when she hits the dance floor she leaves everything else outside of the studio. When she enters the room it is all about the dance, she demands to be treated like everyone else. Silhouettes Director Lynne Patton has commented that the trouble with Kelsie is getting her to stop, rest and breathe! Her Rocky Mountain family is there for her whether she is flying high in the studio or spending time in the hospital. She is surrounded by unconditional support and love, and the whole team dreams of a cure for CF. Kelsie hopes that her successes in dance and life will be inspiration for other kids facing the challenges of a life with cystic fibrosis.

    The Rocky Mountain Silhouettes will face three other acts in the finals of NBC’s America’s Got Talent next week. View their impressive semi-finals performance below, and mark your calendar to watch them in the finals on Tuesday, September 13, at 9 p.m. Eastern.

  • ‘Power Of Two’ Movie Hits Oscar Qualifying Circuit; Documentary Features Sisters With CF

    The Power of Two,” a feature documentary on twin sisters with cystic fibrosis, has been selected for a prestigious Oscar-qualifying documentary showcase and has captured the attention of Hollywood at Los Angeles screenings this week.

    The powerful movie illustrates the intimate bond between Anabel Stenzel and Isabel Stenzel Byrnes, half-Japanese twin sisters who have survived double-lung transplants and emerged as authors, athletes and advocates for organ donation and those living with CF in the United States and Japan.

    “The Power of Two” has been selected for DocuWeeks, the Oscar-qualifying documentary showcase presented by the International Documentary Association. Following a week-long run in Los Angeles (August 19-25), the film will screen 14 times during the week of August 26-September 1 at the IFC Center in New York.

    “The Power Of Two” is the feature directorial debut from Academy Award nominated filmmaker Marc Smolowitz (“The Weather Underground” and “Trembling Before G-d”) and was produced by Twin Triumph Productions.

    NEW YORK
 SCREENINGS
    August 26 – September 1, 2011

    IFC Center

    323 Sixth Avenue at West Third Street

    To purchase tickets: www.ifccenter.com/films/the-power-of-two/

    Other screenings include:

    BOULDER, CO
    Life & Death Matters Film Festival
    Saturday, September 3

    SAN FRANCISCO, CA
    Bay Area Premiere Gala
    Saturday, September 10

    RICHMOND, VA
    United Network for Organ Sharing (UNOS) Public Screening
    Tuesday, September 13

    WASHINGTON, DC
    Capitol Hill Screening
    Wednesday, September 14
    DC Premiere Gala
    Thursday, September 15

    AKRON, OH
    Akron Film + Pixel Festival
    Saturday, October 8

    SAN DIEGO, CA
    San Diego Asian Film Festival
    Late October date TBA

    SANTA FE, NM
    Santa Fe Independent Film Festival
    Late October date TBA

    ST. GEORGE, UT
    Red Rock Film Festival
    Friday, November 11

    For more information about the film and its screening dates/locations, and to watch the trailer, go to www.thepoweroftwomovie.com/.