Cystic Fibrosis Foundation

In a Q&A with Healio, the CF Foundation’s chief scientific officer, Steven Rowe, MD, discussed antisense oligonucleotide genetic therapies for cystic fibrosis — what they are, who may benefit from them, and what a successful therapy could do for people with other pulmonary diseases.

Every year, teens from across the country gather to advocate for cystic fibrosis — either sharing their own experiences with CF or speaking on behalf of a loved one. This year’s Teen Advocacy Day interns share why they advocate and how it has impacted them, even after returning home.

Thank you to the teen advocates who joined us for our 16th annual Teen Advocacy Day! More than 70 teens helped to ensure lawmakers better understand the needs of people living with cystic fibrosis by sharing their personal stories with Congress to pass the PASTEUR Act. Thank you to all the teens who came together with the shared mission of sparking change and positively impacting the CF community.

Cystic fibrosis very often results in bronchiectasis, a type of lung damage characterized by an abnormal widening of the airways of the lungs, which can be associated with mucus accumulation, inflammation, and infection. For World Bronchiectasis Day, Julie Carel shares her experience with discovering she had bronchiectasis and how it led to her cystic fibrosis diagnosis at 67 years old.

Today, teens from across the country are joining us in person and online for our 16th annual Teen Advocacy Day! Teens are urging their representatives to pass the PASTEUR Act, legislation that will incentivize the development of highly innovative antimicrobials to fight deadly infections. You can show your support for the teens participating in Teen Advocacy Day. Urge Congress to pass PASTEUR by sending a message to your representatives. https://lnkd.in/e2v_ij-Z

We’re excited to introduce three additional Teen Advocacy Day interns helping make this year’s Teen Advocacy Day possible. Get to know a little more about them below! “I appreciate the virtual advocacy experience for the opportunity to bond with other teens with CF. Being able to share our stories is so important and I am excited to connect over the next few weeks,” said Megan Riordan, a Teen Advocacy Day intern and a young adult with cystic fibrosis. Teens from across the country come together in person and online for Teen Advocacy Day. It’s a time to connect with others in the CF community over our shared mission: a cure for cystic fibrosis. “This will be my eighth Teen Advocacy Day and I advocate for my older sister, Lauren,” Katherine Black, a Teen Advocacy Day intern, said. “I am most excited about meeting all the advocates this year and helping get them ready for the Hill!” This year’s Teen Advocacy Day interns bring with them a wealth of experience, having participated in a combined 20 Teen Advocacy Days. Their expertise will help this year’s participants understand what to expect and feel prepared to share their stories with members of Congress. “I advocate for my younger sister, Anabelle, who lives with CF,” Sloane Kann, a Teen Advocacy intern, said. “My favorite part about Teen Advocacy Day is the opportunity to connect with so many people from across the country who have shared similar experiences and want to make a difference in the CF community.”

On Teen Advocacy Day, teens from across the country will help ensure members of Congress better understand the needs of people with cystic fibrosis. As we finalize this year’s event, we’re thrilled to introduce some of our Teen Advocacy Day interns helping make this event possible. “This will be my third Teen Advocacy Day advocating for my older sister, Lexi, who has CF,” Brooklyn Klein, Teen Advocacy Day intern said. “I remember the interns from both previous years being a great source of advice and helping to make Teen Advocacy Day less intimidating. I hope I can do that for teens this year!” Feeling nervous about meeting with your representatives is normal for many people, whether they’re teens or adults. However, sharing personal stories about life with CF and the impact of infection with members of Congress helps put a face and name to this disease. “I’m 21 years old and I have CF,” Sydney Willig, Teen Advocacy Day intern, said. “I participated in Teen Advocacy Day virtually in 2020. My favorite memory from the experience was meeting so many amazing people with CF and learning how sharing my story can make an impact for everyone in the CF community. I can't wait to meet so many other inspiring CF fighters and help them learn how to start their advocacy journey.” Leave a 👋 in the comments below to welcome Brooklyn and Sydney, and stay tuned to get to know the rest of this year’s interns.

According to 2023 Patient Registry data, the median predicted age of survival for people with cystic fibrosis born between 2019-2023 is 61. The prediction is based on people who participated in the Foundation’s Patient Registry between 2019 and 2023. This median predicted survival age is the age beyond which we expect 50% of babies with CF born between 2019-2023 to live, assuming no changes to currently available CF treatments. While we are proud of this continued improvement, we recognize that this longer lifespan does not represent the experience for everyone with CF. And median predicted survival for everyone with CF is still well below the overall life expectancy for the overall U.S. population. Quality of life — not just quantity — is tremendously important. We’re working harder than ever to develop transformative treatments for all people with CF and support high-quality, specialized care across our care center network.

Because people with cystic fibrosis are less able to produce sputum (or phlegm) while taking CFTR modulators, we are focused on developing new tests to detect and diagnose infections without using sputum. We are following up on promising work to use blood, urine, or even breath to determine which bacteria are present in the lungs. For more information on infection research: https://lnkd.in/ghzypk47

How can you enhance your fundraising skills to advance our mission to cure cystic fibrosis? Join other dedicated CF Foundation volunteers June 18 at 8 p.m. ET for an engaging 60-minute passion fundraising workshop. Attendees will: - Gain insights from a panel of volunteers on creating and running successful events - Engage in breakout groups for personalized advice and strategies - Network with a community dedicated to making a difference We can’t wait for you to join us. Reserve your seat now: https://lnkd.in/gcxeWsMP