Category: CF Community

  • Most Parents Unaware of Medical Research Opportunities for Their Kids

    Note: For information about clinical trials related to cystic fibrosis research, please visit our Research page.

    Eighty-four percent of parents say they don’t know about opportunities for their children to participate in medical research; only 5 percent of children have participated in medical research across the United States.

    One in nine adults have participated in medical research. In contrast, only one in 20 children have done so.

    Those are the findings of a poll earlier this year by the University of Michigan C.S. Mott Children’s Hospital National Poll on Children’s Health. The poll asked adults and parents about their views on medical research and past participation for themselves and their children.

    The poll also found that most adults (68%) are aware of medical research opportunities for adults. In contrast, the majority of parents (84%) are not aware of medical research opportunities for children.

    “Medical research is the backbone of improving medical care. Without volunteers, medical research cannot move forward,” says Matthew Davis, M.D., director of the poll and associate professor in the Child Health Evaluation and Research Unit at the U-M Medical School. “Awareness about research opportunities, which is a necessary step before participation, is reasonably high among adults but strikingly low for children’s research. To improve participation rates among children, researchers and institutions evidently need to do a better job of getting the word out to parents.”

    Participation in research is key to continued medical progress, Davis says. Over the last 100 years, infant mortality in the United States has been reduced by 90 percent. Millions of deaths from diseases such as polio, diphtheria, pneumonia and influenza have been prevented by vaccines. Children with life-threatening diseases such as cystic fibrosis, sickle cell disease and diabetes now survive beyond childhood, into adult years.

    All these advances have been made possible through medical research. Successful pediatric research requires the voluntary participation of children and the support of their parents, Davis adds.

    The poll also found that participation in medical research by adults is higher among non-Hispanic whites (14%) than among Hispanics (4%) or non-Hispanic blacks (2%).There are no racial/ethnic disparities for kids related to research participation. This positive finding sets an equitable foundation for efforts to expand awareness and recruit children from all backgrounds for medical research in the future.

    For more information, please visit the C.S. Mott Children’s Hospital National Poll on Children’s Health: www.med.umich.edu/mott/npch/

    Source: University of Michigan Health System

  • Abbott Test Assists in CF Screening

    A diagnostic test from Abbott provides information used for CF carrier screening, newborn screening and confirmation of CF diagnoses in newborns and children.

    The Cystic Fibrosis Genotyping Assay looks for and examines mutations and variants in the cystic fibrosis transmembrane conductance regulator (CFTR) gene in human DNA. The panel includes mutations and variants recommended by the American College of Medical Genetics and the American College of Obstetricians and Gynecologists, plus additional mutiethnic mutations.

    According to Abbott, the Cystic Fibrosis Genotyping Assay provides information intended to be used for carrier screening in adults of reproductive age, as an aid in newborn screening, and in confirmatory diagnostic testing in newborns and children. The test is not indicated for use in fetal diagnostic or pre-implantation testing. This test is also not indicated for stand-alone diagnostic purposes.

    For more information, please visit the Abbott Molecular website.

    Source: Abbott

  • A Heroic Group of Women Triumphing over Cystic Fibrosis

    The New York Daily News featured six heroic women who battle cystic fibrosis daily. These six friends share several special bonds, the two most notable being their shared disease and the survival of double lung transplants. This inspirational group met while searching online for CF support groups and now consider each other “cysters” and family.

    Please visit the New York Daily News online article to learn more about this inspirational group

  • New Podcast: Marc Smolowitz, Director of ‘The Power of Two’

    New Podcast: Marc Smolowitz, Director of ‘The Power of Two’

    In the latest podcast from the Boomer Esiason Foundation, director Marc Smolowitz discusses how “The Power of Two” documentary film is raising awareness of cystic fibrosis and organ donation.

    “The Power of Two” offers an intimate portrayal of the bond between half-Japanese twin sisters, Anabel Stenzel and Isabel Stenzel Byrnes, their battle with cystic fibrosis and the miraculous survival through double-lung transplants.

    Marc says he enjoys heath care storytelling that lends itself to bigger and more personal issues. “Seeing what patients go through with a chronic illness is very powerful,” he says. “Most people take breathing for granted, but it is amazing what people with CF go through just to breathe … I tried to focus a lot on breathing throughout the film.”

    For more information on the film, visit The Power of Two website (http://www.thepoweroftwomovie.com).

    You also may view more CF podcasts on our website.

    This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

  • National Minority Donor Awareness Day Marks Fifteenth Anniversary on August 1

    August 1 marks the fifteenth anniversary of National Minority Donor Awareness Day, a special day set aside each year to call public attention to the critical need for people of African-American, Hispanic and other minority heritages to register as organ and tissue donors and share their decisions with their loved ones.

    According to the U.S. Department of Health and Human Services (HHS), of the 100,000 people on the transplant waiting list, about half, or 51 percent, are minorities. African Americans make up the biggest portion of minorities on the waiting list at 27 percent, followed by Hispanics, Asians, Native Americans and Pacific Islanders. Most often people on the waiting list are awaiting kidney transplants. Although minorities make up 20 percent of the United States population and 23 percent of donors, there are often opportunities to donate while living and improve another person’s life.

    To find out more about organ donation, please visit the Organ Donation page on our website.  The HHS Office of Minority Health offers a wealth of information and resources on minority organ donation, transplants and healthy living on its website.

  • Teen with CF Educates Multicultural Populations About Organ Donation and Coping with Serious Illness

    Super Power of Positivity by Tyler NelsonTyler D. Nelson, 17, knows all too well what it is to worry. At just two days old, Tyler was diagnosed with cystic fibrosis and is currently waiting for lung and liver transplants at Texas Children’s Hospital.

    But despite the challenges he faces, Tyler has managed to turn a negative into a positive. In an effort to promote organ donation and to help chronically ill children cope and improve their quality of life, Tyler has written an e-book to be given away for free online. He created the book to provide helpful tips and free resources, and to educate teens and adults on the importance of positivity and how teens can help save lives, too.

    “I look at my life as a positive,” Tyler said. “I noticed that most chronically ill patients let their disease or illness take over their life and mindset. I don’t do that and I thought this free e-book cold help someone else live a happy and full life while they wait for a miracle,” he said.

    The e-book, titled The Super Power of Positivity, is available as a free download on www.giftstotyler.org and other partner websites starting August 1, 2011, which also is National Minority Donor Awareness Day.

    In an effort to promote organ donation, Tyler and his family also have started the “Show Me Yours Campaign.” This campaign was launched to help promote organ donor registration amongst teens and young adults.

    To learn more about Tyler’s story and download a copy of the e-book, please visit www.giftstotyler.org. To show your support for the Show Me Yours Campaign, please visit showmeyourscampaign.blogspot.com.

  • Irish Woman Receives Groundbreaking Lung Transplant

    A young Irish woman has made medical history after a double world-first operation to cure her lung condition.

    Becky Jones, 20, who is now out of intensive care following surgery, said: “I can’t, for the life of me, remember feeling so well. The world is officially my oyster.”

    She made history twice by being the first patient to have a lung transplant while suffering from multi-resistant Aspergillus, a common airborne fungus, and multiple fungal balls in her old lungs.

    Lung transplant patients have never before been able to have the operation while suffering from either of these conditions.

    She was airlifted from her home in Dublin for the ground-breaking treatment by world-leading experts at the University Hospital of South Manchester in Wythenshawe.

    Aspergillus is a large number of diseases involving both infectionand growth of fungus as well as allergic responses.

    The condition had left Becky virtually house-bound, unable to walkproperly, climb stairs or go out with friends.

    She had been on the waiting list for more than a year and was accepted for transplant only because the hospital also houses the National Aspergillosis Centre, which specialises in treating the condition. On May 29 she underwent the historic op and just 18 days later is outof intensive care, tucking into her food and making plans for a future.

    She added: “Words simply cannot begin to describe the pure relief I feel.

    “The chains have been lifted. I can breathe. I now plan to travel and study fashion design at college.”

    Professor David Denning, who is director of the NAC, said: “Becky’s transplant brings together a remarkable set of expertises in fungalinfection, molecular testing, advanced transplantation techniques and intensive care, all under one roof.

    “With increasing antifungal resistance since 2004, she is a courageous torchbearer for others.”

    Becky developed Aspergillosis because she has cystic fibrosis.

    Source: The Mirror (London, England)

  • Cystic Fibrosis at the Presidential State of the Union VIA SCIENCEMAG.ORG

    “Science gets its moment in Obama’s 2015 State of the Union”

    VIA SCIENCEMAG.ORG

    By David Malakoff

    Science rarely makes a major appearance in the President’s annual State of the Union address. Tonight’s speech by President Barack Obama maintained that tradition – but he did take a few moments in the 60-minute address to stake out a strong defense of his administration’s policies to combat climate change, and to preview a new “precision medicine” initiative that aims to tap genetic and other information to improve treatments for human diseases.

    “I want the country that eliminated polio and mapped the human genome to lead a new era of medicine – one that delivers the right treatment at the right time,” Obama said.  “In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable.  Tonight, I’m launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes – and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

    The White House has yet to release any other details about the initiative – such as whether it will involve additional funding for biomedical research — but it appears to refer to a rapidly growing research area also known as “personalized medicine.” The personalized approach attempts to take account of each person’s unique biological make-up to design effective treatments, and avoid using those that won’t work. Knowing that a cancer tumor contains certain genetic traits, for example, can help clinicians pick the best drugs.

    Obama’s reference to the approach’s value in treating cystic fibrosis appeared, in part, to be a reference to medical student William Elder, Jr., of Colorado, who the White House invited to sit with First Lady Michelle Obama in the audience. Elder “was diagnosed with cystic fibrosis when he was eight years old, at a time when most cystic fibrosis patients were only expected to live to early adulthood,” according to a White House statement. “But thanks to a unique collaboration between the Cystic Fibrosis Foundation, patients, researchers, and a pharmaceutical company, Bill, now 27, expects to live a long, full life.  He benefits from a medication that targets the underlying cause of the disease for a small subset of cystic fibrosis patients.”

    In addressing climate issues, Obama noted that “2014 was the planet’s warmest year on record.  Now, one year doesn’t make a trend, but this does – 14 of the 15 warmest years on record have all fallen in the first 15 years of this century.”

    “I’ve heard some folks try to dodge the evidence by saying they’re not scientists; that we don’t have enough information to act,” he continued, in a comment clearly aimed at Republican politicians who have used that line in an effort to avoid taking a position on the reliability of climate science. “Well, I’m not a scientist, either.  But you know what – I know a lot of really good scientists at NASA, and at NOAA, and at our major universities.  The best scientists in the world are all telling us that our activities are changing the climate, and if we don’t act forcefully, we’ll continue to see rising oceans, longer, hotter heat waves, dangerous droughts and floods, and massive disruptions that can trigger greater migration, and conflict, and hunger around the globe.  The Pentagon says that climate change poses immediate risks to our national security.  We should act like it.”

    “And that’s why… over the past six years, we’ve done more than ever before to combat climate change, from the way we produce energy, to the way we use it,” Obama said. “And that’s why I will not let this Congress endanger the health of our children by turning back the clock on our efforts.  I am determined to make sure that American leadership drives international action.  In Beijing, we made an historic announcement – the United States will double the pace at which we cut carbon pollution, and China committed, for the first time, to limiting their emissions.  And because the world’s two largest economies came together, other nations are now stepping up, and offering hope that, this year, the world will finally reach an agreement to protect the one planet we’ve got.”

    Tonight was not the first time that Obama has spoken out on climate change in his State of the Union addresses.  In last year’s speech, he flatly stated that “climate change is a fact.”

    Another White house guest in the crowd was Nicole Hernandez Hammer, a climate activist who has focused her work on climate change’s impacts in Florida. Hammer, who came to the U.S. from Guatemala as a child, “has studied how the cities and regions most vulnerable to the effects of climate change and sea-level rise also have large Hispanic populations — something she learned firsthand growing up in South Florida,” according to a White House statement. Formerly a project director Florida Atlantic University’s Center for Environmental Studies, Hammer has consulted with Union of Concerned Scientists and now serves Florida field manager for the Moms Clean Air Force, a group seeking to “further the public’s awareness of climate change on children’s health,” the White House says in a blog post.

    A third guest — who got a shout out from Obama during the speech – was NASA astronaut Scott Kelly, who later this year is slated to become the first American to attempt a year-long stay aboard the International Space Station. His brother Mark, a former NASA astronaut who gained national attention after an assassination attempt on his wife, former Representative Gabrielle Giffords (D-AZ), was a guest at last year’s speech.

    Scott Kelly and his crewmates “will carry out hundreds of research experiments and work on cutting-edge technology development that will inspire students here at home in science, technology, engineering and math,” the White House statement says. Scientists also will compare medical data from Scott and Mark, “to gain insight into how the human body responds to longer durations in space,” information that could prove useful for planning a future mission to Mars, the White House suggests.

    “Last month, we launched a new spacecraft as part of a re-energized space program that will send American astronauts to Mars,” Obama said tonight. “In two months, to prepare us for those missions, Scott Kelly will begin a year-long stay in space.  Good luck, Captain – and make sure to Instagram it.”

    With reporting by Puneet Kollipara

  • New Infection Prevention and Control Policy from the CF Foundation

    Because cystic fibrosis puts the airways at risk for lung infection, the Cystic Fibrosis Foundation has an Infection Prevention and Control Policy in place to protect the health of people with CF at all Foundation events, meetings, and any other gathering places.

    Proven ways to prevent or lessen risk for infection between people without CF and people with CF are:
    1. Limiting or completely avoiding contact with germ sources
    2. Keeping your hands clean – either with alcohol-based hand gel or with soap and water
    3. Anyone with a cold or illnesses that spread germs should avoid contact with people with CF until they are completely healthy.

    According to medical evidence, people with CF could have germs in their lungs and sinuses that spread to others with the disease. The following safety practices – recently updated – are in place to promote safety and reduce cross-contamination risk among people with CF.
    1. Keep your hands clean at all times.
    2. Cover your cough.
    3. Only one person with CF may be present at indoor events, meetings, or gatherings.
    4. People with CF must maintain a 6 feet distance from each other while at outdoor gatherings.
    5. If a CF patient has a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex, he or she should not attend any events, meetings, or gathering where another person with CF could be present.
    *The CF Foundation’s policy reflects the advice of leading CF medical experts and medical research.

    CFF Prevention and Control Policy Update

    Official Prevention and Control Policy 

    Prevention and Control FAQs

     

    Source: Cystic Fibrosis Foundation 

  • The CF Foundation Expresses Concern About Proposed Disability Benefit Changes

    The Cystic Fibrosis Foundation, on behalf of the CF community, has taken its concerns about a proposed rule that raises difficulty for people with CF to receive disability benefits to the Social Security Administration (SSA).

    Recently, the SSA released a proposal that would change the way it determines whether people with respiratory diseases are eligible for disability benefits. The CF Foundation is concerned about the impact of the proposal on those people with CF who are dependent on benefits. Many people with CF receive disability benefits through the SSA Social Security Disability Insurance and Supplemental Security Income programs.

    The Foundation has sent comments to the SSA reflecting its concerns, has mobilized CF care centers within its network, and forwarded a letter signed by more than 100 center directors in order to represent the best interests of the CF community. The CF Foundation will also work with key Congress members to ensure that the concerns of the CF community are addressed and will continue to advocate on behalf of all those with cystic fibrosis.

    Original CFF Article

    CF Foundation’s letter to the SSA

    Letter to SSA from center directors 

     

    Source: Cystic Fibrosis Foundation