Patient journeys highlighted for this year’s PF Awareness Month
‘Every Breath, Every Story’ campaign to showcase stories
This September, supporters will participate in advocacy, educational, and fundraising activities intended to raise awareness about pulmonary fibrosis (PF) and interstitial lung diseases (ILDs) in honor of PF Awareness Month.
As it does each year, the Pulmonary Fibrosis Foundation (PFF) will play a central role in the effort. Its theme this year is “Every Breath, Every Story,” which aims to showcase patient’s individual journeys as a way of motivating supporters to spread the word.
“Pulmonary Fibrosis Awareness Month fosters a more informed and engaged community through our efforts in educating the public, promoting early detection, and advocating for those affected by this disease,” Scott Staszak, president and CEO of PFF, said in a foundation press release. “PF and ILD are serious, debilitating conditions, and we are committed to ensuring that everyone has access to the necessary resources, so no one has to face this journey alone.”
There are hundreds of types of ILDs, which are characterized by inflammation and scarring in the lungs that can impair breathing. Lung tissue scarring, or pulmonary fibrosis, is observed in many types of ILDs. PF and ILD affect more than 250,000 Americans.
In line with this year’s theme, a main event of the month will be PFF’s “Portraits of PF,” in which the foundation will share stories and photos from PF and ILD patients, caregivers, healthcare professionals, transplant recipients, and those who have lost loved ones to the diseases.
Social media campaign
PFF will also post daily content on its social media platforms, including Facebook, X, Instagram, and YouTube. As part of its social media strategy, PFF will launch its “30 Facts in 30 Days” series, posting a fact about PF on social media each day. Supporters are encouraged to comment and share the content using the hashtags #PFMonth and #BlueUp4PF. The organization also offers a number of downloadable images for use in social media posts.
The foundation is also encouraging people to “strike a lung pose,” posting a selfie in which the second knuckles are joined together over the chest to symbolize the lungs.
As with last year’s initiative, buildings across the country will be lit up in blue, the color representing PF. Individuals can ask for buildings or landmarks in their communities to be lit to mark the event. PFF will share images of the lighted buildings every evening throughout the month. The Benjamin Franklin Bridge in Philadelphia, the City Hall Dome in Baltimore, and the White Sox baseball field in Chicago are among structures that will be lit up this year.
A one-hour webinar, “The Journey to Diagnosis: Process, evaluation, and your care team,” will be held at noon CDT on Sept. 18 in honor of the fourth annual ILD Day. Experts will discuss how doctors recognize ILD, choosing treatments, care teams, and self-advocacy. Registration is free.
On Sept. 28, PFF will host its National PFF Walk Day. Patients, caregivers, families, friends, and other supporters can register for free and do the virtual walk for a cure from their own communities. In-person walks are also taking place at various locations across the U.S. throughout September and October.
Chronic cough with no treatment
“Our team is thrilled to be participating in PF Month’s National Walk Day taking place on September 28th for the third year,” Jennifer Good, president and CEO of Trevi Therapeutics, one of the companies sponsoring the event, said in an emailed statement to Pulmonary Fibrosis News. “Our team is based across the U.S., Europe, and Australia, and will be walking in each of their local areas to help promote awareness and the continued need for new therapies for IPF patients,” she said.
As many as 85% of the approximately 140,000 U.S. adults with IPF “experience a debilitating chronic cough,” said Good. “There is a large unmet need for new treatments for patients suffering from this cough, as there are currently no approved therapies.”
Funds raised through the PFF walk will support efforts to accelerate research and improve patient care. The initiative has so far raised more than three-quarters of its $1 million goal.
Other organizations are also gearing up to participate in the yearly event.
Action for Pulmonary Fibrosis in the U.K. is asking participants to “create a stir” by hosting a party to raise funds for PF or “go the distance” by setting an exercise goal and collecting donations.
The European Pulmonary Fibrosis Federation is returning for the fourth year with its “Breathing Life” campaign, with a focus this year on ensuring equitable access to life-saving oxygen, including supplemental oxygen, which PF patients commonly need. The organization offers a range of social media graphics, video materials, and consultation guides about PF on its website. It also encourages supporters to post on social media using the hashtags #PFMonth, #BreathingLife, and #CurePF.
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