The Boomer Esiason Foundation

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.

  • Boomer Urges Donor Registrations in New York State Campaign

    The New York Organ Donor Network kicked off National Donate Life Month with a groundbreaking campaign to increase organ donation registrations in the state and help relieve the state’s critical organ donor shortage.

    The initiative features unprecedented activity at DMVs throughout the region, an enrollment contest amongst areas within the region, and is headlined by former NFL superstar, WFAN’s Boomer Esiason and “30 Rock” star Grizz Chapman. 

    Esiason and Chapman will serve as “captains” of the contest that challenges metro area residents to sign-up on the state donor registry at DMVs or at www.SaveLivesNewYork.org.  Esiason, a longtime champion of organ donation, will serve as captain of Manhattan and Long Island; Chapman, himself a kidney recipient, will lead the outer boroughs and northern counties.

    “We’re thrilled to stand with Boomer and Grizz as we work toward our shared goal of saving more lives through donation,” said Elaine Berg, president and CEO of the New York Organ Donor Network.  “Grizz and Boomer’s help will go a long way toward reducing the critical shortage of organ donors in New York.”

    As part of the contest, organ recipients and families of organ donors will be on site at DMVs throughout the region to share their experiences with donation.  Stories like that of double-lung recipient Andrea Eisenman Downey, who lived to walk down the aisle at her wedding in 2008; and stories like that of Regina Mirailh, whose son saved seven lives through donation after he was tragically killed in a 1999 car accident.

    “I am alive today; I can keep making people laugh today because of the selfless generosity of a stranger who now is family. I thank God and my donor Ryan who saved my life, every day I say thank you,” said Chapman.

    “I’ve long believed that giving the gift of life is the greatest act of charity one person can bestow on another,” said Esiason.  “I’m proud to work with Grizz and the New York Organ Donor Network to help save lives.”

    There are currently more than 110,000 people waiting for life-saving organs in the United States; 8,000 in the New York Metropolitan area alone. 18 die across the U.S. every day while waiting.  Only 16 percent of eligible New Yorkers (age 18 and over) are enrolled on the state donor registry; the national average is nearly 40 percent.  This campaign is born out of an effort to close that gap.

    Among the DMV locations where recipients and donor families will be located are: Springfield Gardens, Hauppauge, Medford, Port Jefferson, Riverhead, Huntington, Garden City Massapequa, Bethpage in Long Island; College Point, Jamaica, Brooklyn, Coney Island, Harlem, Herald Square, Greenwich Street, Midtown in New York City and; West Haverstraw, Peekskill, White Plains, Yonkers in the Northern Counties.

    About the New York Organ Donor Network

    The New York Organ Donor Network is the nonprofit, federally designated organ procurement organization (OPO) for the greater New York Metropolitan area.Established in 1978, the Donor Network is the second largest OPO in the United States, serving a culturally and ethnically diverse population of 13 million people. Working closely with transplant centers and hospitals, we coordinate organ, tissue and eye donation for transplant in the New York region; educate the public and health care professionals about donation and transplantation; promote the importance of signing up on the New York State Donate Life Registry. We work closely with 10 transplant centers, more than 90 hospitals, and various tissue and eye banks. The Donor Network is accredited by the Association of Organ Procurement Organizations (AOPO) and a member of the United Network for Organ Sharing (UNOS), which oversees the organ transplant waiting list in the U.S.

    To find out more about how organ donation relates to cystic fibrosis, please visit the organ donation page on our website.

  • 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)

  • Pittsburgh Hospital Leads in Lung Transplants

    Increased referrals from around the country and surgeons’ ability to use donor lungs once considered unsuitable contributed to a record 131 lung transplants at University of Pittsburgh Medical Center last year, officials said Tuesday.

    The 2010 total was the most among the nation’s 66 lung transplant centers. The centers performed a total of 1,771 lung transplants, according to the United Network for Organ Sharing, a nonprofit organization that tracks organ transplants for the federal government.

    The growth of UPMC’s program is due, in part, to increased transplants among patients with more complicated conditions, said Dr. Joseph Pilewski, transplant pulmonologist and medical director of the UPMC Lung Transplantation Program.

    People with pulmonary fibrosis, emphysema and cystic fibrosis are more likely to require a lung transplant, he said. UPMC is taking some of the higher-risk patients, such as those with a cardiac illness, who are typically rejected by other centers.

    UPMC’s lung transplant patients have an average survival rate of 81 percent after one year and 66.9 percent after three years, according to the most recent data from Scientific Registry of Transplant Recipients, an organ research agency in Ann Arbor, Mich. The survival rates are within expected ranges, according to the agency.

    Survival rates for lung transplant recipients tend to be lower than those for liver recipients because lungs are more susceptible to rejection and infections, Pilewski said. Better ways to do the surgery, such as a minimally invasive technique used since 2007, have minimized problems following the procedure.

    “We have better assessment of donors compared to other institutions,” said Dr. Yoshiya Toyoda, UPMC’s director of cardiothoracic transplantation. UPMC doctors transplant lungs that don’t appear to be usable, he said, but improved donor management — including CT scans and other tests — have shown the organs can help patients.

    “The lung is the same, but other centers think the lung is not good. With proper assessment, most of the lungs are usable,” Toyoda said.

    Federal allocation rules established in 2005 call for the sickest patients to get available lungs, a change that also may have contributed to increased volume, Pilewski said.

    “It was a very flawed system,” he said. “Previously, some patients were dying because they couldn’t obtain suitable organs. But now if patients are sick, they will be transplanted relatively quickly.”

    Since the program began in 1982, UPMC surgeons have performed more than 1,300 lung transplants. In each of the past four years, the program has performed more than 100 transplants. To address the increased volume, UPMC added more transplant coordinators and surgeons, officials said.

    The region’s other lung transplant program, at Allegheny General Hospital in the North Side, was temporarily stopped in July. Two surgeries were performed there in 2010 and only one in 2009.

    Source: Pittsburgh Tribune-Review

  • Out of Grief Sprouts a Life-Saving Legacy

    You don’t have to be rich, famous or even an adult to leave a memorable legacy that can change lives.

    Just ask Stacey Oglesby of Lockwood, Mo., whose 15-year-old daughter, Colbey, died in a car accident in 2001. Colbey had told her mother that when she got her driver’s license, she was going to sign up to be an organ donor. So when hospital personnel asked about organ donation, Ms. Oglesby said, ‘‘we had no hesitancy.’‘

    Seven people got Colbey’s organs. Her lungs went to Valerie Vandervort, a 29-year-old Oklahoma woman with cystic fibrosis. In the nine years since, Ms. Vandervort has run three 5K races, hiked a mountain, danced at her sister’s wedding, doted on her nieces and nephews, and won medals in swimming at the 2010 National Kidney Foundation United States Transplant Games.

    Ms. Oglesby also befriended the recipient of Colbey’s heart, Judy Kaufman of Chesterfield, Mo., who was near death with congestive heart failure. When they met, Ms. Oglesby took a stethoscope to listen to the beat of her daughter’s heart.

    Ms. Oglesby, who speaks often about Colbey’s legacy, said she has inspired others to become potential organ donors. If not for donating her daughter’s organs and connecting to the recipients, she said, ‘‘it would have been hard to get through the grief.’‘

    A Widespread Need

    At any given time in the United States, more than 100,000 people are waiting for donor organs, more than 10 times as many as become available. Some die waiting; others get sicker and sicker, sometimes too ill to survive when a suitable organ finally becomes available.

    In addition to kidneys, heart, lungs, liver, pancreas and intestines, donations can include tissues like corneas, skin, heart valves, bone, veins, cartilage, middle ear, tendons and ligaments that can be stored in tissue banks and used when needed.

    Most donations come from people who die suddenly, usually from an accident, a gunshot or a brief illness that resulted in brain death. (A small but growing number of donations follow cardiac death.) Some adults indicate their wish to be donors by signing the back of their driver’s license or a donor card or simply telling their next of kin. For minors, hospital personnel often ask the distraught parents if they would consider donating their child’s organs.

    But when 6-year-old Katie Coolican died in 1983 from an undiagnosed heart malformation, it was her mother, Maggie, a nurse, who asked about donating the child’s organs—‘‘to make some sense of it all,’’ Ms. Coolican, of East Hampton, Conn., said in an interview.

    ‘‘We were willing to donate anything,’’ she added, ‘‘but at the time all they could use were Katie’s corneas and kidneys.’‘

    Likewise for Julie Schlueter of Winsted, Minn., whose daughter, Missy, 10, died of a cerebral hemorrhage in 1992: donating the girl’s organs meant her loss was not in vain.

    Missy’s liver and one kidney went to a man who four years later won a silver medal in the Summer Olympics in Atlanta; he sent the medal to the Schlueters to thank them for enabling him to live. Two toddlers, one from Italy and the other from Colorado, got Missy’s heart valves. And an Iowa woman, then 47, got her other kidney and is still doing well 18 years later.

    Rose D’Acquisto of St. Paul said that donating all her husband’s usable organs ‘‘has led to things I’d never imagined.’‘

    Her husband, Tony, died in 1996 at age 35 when an undiagnosed brain tumor hemorrhaged and left him in an irreversible coma. Ms. D’Acquisto said the recipient of his liver—an Indiana man near death with a rare liver disease—had now been married more than 30 years and has three grown children.
    And the Minnesota farmer who got one of Tony’s kidneys got his life back; he had spent three years traveling three hours a day three times a week for dialysis.

    Ms. D’Acquisto, now remarried, says she continues to write and speak about organ donation as love’s greatest gift. Along with Ms. Schlueter, she was among more than 7,000 people who attended the Transplant Games last month in Madison, Wis.

    When Katie Coolican died, there was no follow-up care for families who donate the organs of their loved ones. After a few years of struggling with grief, her mother wrote about her experience in The American Journal of Nursing and began speaking about organ donation all over the country.

    She went back to school, got a master’s degree and wrote a booklet, ‘‘For Those Who Give and Grieve,’’ that was published by the National Kidney Foundation. (The foundation also publishes a quarterly newsletter with that title, edited by Ms. D’Acquisto.)

    ‘‘Katie’s had a wonderful legacy that continues to this day,’’ Ms. Coolican said. In 1992 she founded the National Donor Family Council for the kidney foundation to help grieving families that donate loved ones’ organs and tissues. The two-year follow-up program she created for families has become a model for organ donation programs throughout the country.

    Who Is Eligible to Give?

    Do not rule yourself out as a potential donor because you think you may be too ill or too old. Only a few circumstances, like pervasive infection or active cancer, absolutely preclude organ donation, and there is no age limit. People in their 80s and 90s have been successful donors of certain tissues, as have newborns. But for anyone under 18, a parent or guardian must approve the donation.

    Even if a person dies after an illness that precludes organ donation, or if too much time elapsed after death for organs to be viable, there is still the opportunity of whole-body donation to a medical college, where the body can be used in research or to help students learn anatomy.

    While it is best to register one’s interest in whole-body donation with a medical school in advance of death, after death it is up to the next of kin to make it happen. You no longer own your body after you die. If this is something you would want for yourself, discuss it with your spouse and children, who must agree with your wishes.

    Most religions support organ donation as a charitable act, although some may not condone whole-body donation. Check the Web site www.organdonor.gov and click on ‘‘Religious Views on Donation’’ for guidance.

    Author: Jane E. Brody
    Source: New York Times

  • 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

  • With Resurgence in Polymyxin Use, CHMP Revises Label via Medscape.com

    SOURCE

    The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended revisions to the product information for antibiotics known as polymyxins (colistin or colistimethate sodium) for the treatment of serious infections that are resistant to standard antibiotics.

    Polymyxins, first introduced in the 1960s, fell out of use after the development of newer antibiotics with fewer adverse effects. In recent years, however, there has been a resurgence in polymyxin use as bacteria have become more resistant to the newer agents, leading to concern about whether the old dosing and pharmacokinetic information on the label was accurate. Thus, the CHMP reviewed the available clinical, pharmacologic, and pharmacokinetic data.

    The committee cautions that there are “significant gaps” in those data, particularly with regard to pharmacokinetics in special populations such as children and patients with renal impairment. Research is currently underway and should yield more information. In the meantime, the CHMP determined that the product information should be updated with the following information, based on what is currently known:

     

    • Doses of colistimethate sodium should always be expressed in international units. However, because milligrams are often used in the literature, the label will include a conversion table.

    • Intravenous colistimethate sodium is indicated in adults and children (including newborns) for the treatment of serious infections resulting from Gram-negative pathogens when few other treatment options are available. Coadministration with another antibiotic should be considered when possible.

    • On the basis of very limited information, CHMP determined that the recommended dose in adults is 9 million IU daily in two or three divided doses as a slow intravenous infusion. Critically ill patients should receive a loading dose of 9 million IU. In patients with renal impairment, doses should be reduced according to creatinine clearance.

    • The suggested dose for children is 75,000 to 150,000 IU/kg daily in three divided doses.

    • Where appropriate, adult doses of 125,000 IU for intraventricular administration, and no more than this for intrathecal administration, are recommended.

    • Great caution is urged in using intravenous colistimethate sodium together with other potentially nephrotoxic or neurotoxic medications.

    • Colistimethate sodium solutions can be given by inhalation the management of chronic pulmonary infections resulting from Pseudomonas aeruginosa in adults and children with cystic fibrosis. The recommended dose in adults is 1 to 2 million IU given two or three times a day, and in children, the recommended dose is 0.5 to 1 million IU twice daily, adjusted according to the severity of the condition and the response.

    Oral, topical, and dry powder inhalation polymyxin products were not covered in this review.

    The CHMP recommendations will now be forwarded to the European Commission, which will issue a final decision “in due course.”

    The US Food and Drug Administration has not taken similar action. “There are no active FDA safety reviews of [polymyxin] products. As with all drugs, we will continue to monitor for safety issues and take appropriate action if needed,” an FDA spokesperson told Medscape Medical News.

    SOURCE

  • Updates on Sarah Murnaghan and Pediatric Lung Transplant

    Video Source: CNN

     

    After six months in the hospital and after two double lung transplants, Sarah is finally returning home. 

     

    Sarah Murnaghan, a ten year old with cystic fibrosis, has been fighting for her life in the hospital for almost two years – in desperate need of a new pair of lungs. Because she is under the age of 12 and because of the organ allocation system rules, she has not been allowed to be placed on the adult transplant list.  But, after a long, hard fight, the Murnaghan family finally achieved their goal: to win an emergency motion that suspends the current donor rule. Judge Michael Baylson has issued a temporary restraining order after hearing arguments Wednesday (6/5) afternoon. This temporary order instructs the Department of Health and Human Services Secretary to tell the group that oversees the transplant list to stop the application of the 12 and under rule in Sarah’s case. Ten days from now, there will be another hearing on the case. 

     

    Read more here. 

     

    Source: MyFoxPhilly.com

  • Boomer: Sarah’s Transplant is a miracle

    Boomer: Sarah’s Transplant is a miracle

    Boomer responds to FOX’s Sheppard Smith on the news that 10 year old Sarah Murnaghan has received a lung transplant at Children’s Hospital of Philadelphia.  The Boomer Esiason Foundation sends Sarah and the Murnaghan family our thoughts and prayers.

    Recently, Sarah Murnaghan (10) and Javier Acosta (11), both children battling cystic fibrosis, won federal lawsuits to be placed on the adult lung transplant list. The organ donation allocation system does not usually allow children under the age of 12 to be placed on the adult list, making it less likely that they will ever see a new pair of lungs.

    Boomer sat down with Shephard Smith to discuss a very import topic, one that is very close to his heart – organ donation and transplantation. As a parent of a child living with cystic fibrosis, Boomer can relate to what the Murnaghan family is dealing with, and encourages everyone to become organ donors.

    Please learn more about cystic fibrosis here.

    Learn more about organ donation here.

     

    Link to FOX News  full video here.

  • 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