From lighting landmarks in blue to showcasing patient stories, supporters are finding ways to mark Pulmonary Fibrosis Awareness Month, set aside each September to call attention to the lung condition and raise funds to fight it.
The monthlong campaign is spearheaded each year by the Pulmonary Fibrosis Foundation (PFF), buttressed by global and local efforts to heighten awareness of the disease and its impact.
For its part, the American Association for Respiratory Care (AARC) is marking the month by highlighting resources that can help better prepare respiratory therapists to assist patients with chronic lung diseases such as pulmonary fibrosis, or PF.
For example, the organization offers a Pulmonary Disease Educator Course that can help therapists focus their involvement with PF patients on evidence-based activities and interventions. Other AARC resources, including the Clinician’s Guide for Treating Tobacco Dependency as well as the Pulmonary Rehabilitation Certificate Course, target specific interventions that can improve quality of life.
Meanwhile, the Lung Transplant Foundation is spreading awareness by sharing patients’ stories. The foundation is currently highlighting Ohio resident Tammy Robinson who, after many years of seeking answers for her symptoms, was diagnosed with idiopathic PF (IPF) at age 43.
By 2015, her condition had progressed to the point that she needed a double lung transplant. Despite serious complications due to the 2016 surgery, Robinson says she now feels great.
“I am truly an organ transplantation success story,” Robinson said in the narrative. “I took a year to recover, but I never gave up the fight. You have to have will, determination, and a positive attitude to make it through something like this.”
In Canada, PF organizations also are observing Awareness Month. In a blog, the Canadian Pulmonary Fibrosis Foundation is featuring 12-year-old Abbie Clarke who, having lost several family members to PF, organized a run/walk to raise disease awareness as well as research funds. The Clarke Walk for Pulmonary Fibrosis is now a yearly event.
The organization also is hosting Canada-wide “Hope Breathes Here” events through September, and offers a host of tools and information participants can use in their efforts.
Lung Foundation Australia is supporting the month by highlighting resources being offered in its country, including peer connect services, support groups, education seminars, and free webinars. Go here for more information.
CHI St. Alexius Health in North Dakota is getting involved by explaining the disorder and its symptoms, causes, diagnosis, and treatments.
Elsewhere, Piedmont Healthcare in Georgia and a bevy of medical programs are partnering with the PFF to present the virtual Southeast Regional Pulmonary Fibrosis Educational Symposium, to be held Sept. 19. Go here to register. The free, online educational event will bring together experts from organizations including Duke University Medical Center and Pulmonix at Cone Health Medical Group, both in North Carolina, Emory University Medical Center in Georgia, the Medical University of South Carolina, University of Alabama at Birmingham Medicine, and Vanderbilt University Medical Center in Tennessee.
The Wescoe Foundation for Pulmonary Fibrosis hosted an interactive virtual seminar on the latest in IPF research and treatments for patients, caregivers, and families, and also is offering free PF awareness face masks throughout the month.
In the U.K., Action for Pulmonary Fibrosis also is joining awareness efforts by encouraging supporters to advocate politically, host a virtual event, and participate in its Go the Distance challenge of walking 10,000 steps a day for the month of September. It also is offering resources to help supporters get involved.
Still, it’s the Pulmonary Fibrosis Foundation that does most of the heavy lifting. This year is different due to the physical distancing requirements caused by the pandemic. But many activities have been adapted to accommodate such restrictions or are taking place virtually.
“Our research shows a clear need to improve understanding of pulmonary fibrosis to help drive earlier diagnoses, advocate for needed research, and ultimately find a cure,” William Schmidt, president and CEO of the PFF, said in a statement emailed to Pulmonary Fibrosis News.
“In the midst of the pandemic, we are especially grateful to the PF community for uniting during Pulmonary Fibrosis Awareness Month and joining our virtual walks, participating in educational events, and sharing facts and stories about this debilitating disease,” Schmidt said.
As part of its 30-day campaign, the nonprofit organization is celebrating a diverse group of what it calls #PFHeroes, individuals who both live with the disease and work to raise awareness. Among them are Tom Frey, a World Trade Center first responder who developed the disease after his 9/11 rescue and recovery efforts in New York City nearly 20 years ago.
Through the month, prominent buildings and other structures are awash in blue — the official color symbolizing PF. And, on social media, the PFF is sharing “30 Facts in 30 Days” to educate the public about the disease. It’s also posting “Portraits of PF,” a series that showcases stories by patients, caregivers, and healthcare professionals.
To further spread awareness, supporters can take a selfie of themselves wearing blue and share it using the hashtag #BlueUp4PF. Photos also can be downloaded and shared using customized social media profiles, cover photos, timeline images, and social media content.
On Sept. 26, the foundation will present the PFF Walk At-Home Edition. PF community members will come together digitally to share why they participate in the annual fundraiser. There will be live interviews and highlights from walkers across the country. An event link will be emailed to registrants.
Beginning this month, there will be five virtual PFF Walks — or supporters can host their own community walk from anywhere and at a time of their choosing. As an alternative, participants can dance, sing, complete a virtual workout class, or use art skills to create a PF project. Go here for more information about how to participate.
“Let the world know: September is Pulmonary Fibrosis Awareness Month,” the PFF states in its announcement. “Each September, join with those who have been impacted by pulmonary fibrosis worldwide to unite.”
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