PFF In The Media

Cough-Specific Quality of Life Predicts Disease Progression Among Patients With Interstitial Lung Disease

We analyzed data from the Pulmonary Fibrosis Foundation Registry, which comprises a multicenter population of well-characterized patients with ILD. We first examined associations between patient factors and baseline scores on the Leicester Cough Questionnaire (LCQ), a cough-specific QOL tool, using a proportional odds model. Next, we examined associations between baseline LCQ scores and patient-centered clinical outcomes, as well as pulmonary function parameters, using a univariable and multivariable proportional hazards model that was adjusted for clinically relevant variables, including measures of disease severity.

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Indoor Air Quality is Essential to Lung Health

Air quality may seem like something to consider only when you are venturing outdoors. However, indoor concentrations of some pollutants are often two to five times higher than typical outdoor concentrations, according to the Environmental Protection Agency (EPA).

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Listen: Her mom died of pulmonary fibrosis. Now, she’s asking for more research into the disease that scars your lungs.

In the latest installment of our occasional conversations with Fort Worth leaders, Arlington resident Stephanie Golden shares her family’s journey with pulmonary fibrosis — and why she’s asking Capitol Hill for more research into a cure.

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COVID-19 Guidance Often Neglects People With Rare Diseases

In mid-March 2020, with the agreement of my then-rheumatologist, I decided to leave New York City just as it became the epicenter of COVID-19. As someone who lives with vasculitis, I was afraid of how my body would react to the virus. Under my rheumatologist’s guidance, I needed to take an abundance of caution when it came to COVID-19.

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Pulmonary Fibrosis Foundation Marks Rare Disease Day Through Education and Awareness of Pulmonary Fibrosis

Today, 5% of the worldwide population is affected by rare diseases, translating to 300 million people*. Rare Disease Day on February 28 provides an opportunity to raise awareness for the more than 6,000 identified rare diseases, including pulmonary fibrosis (PF). As Chief Medical Officer of the Pulmonary Fibrosis Foundation (PFF), I’m here to mark the observance and highlight the need to increase public understanding of PF through disease education, research initiatives, and helpful resources for patients, caregivers, and providers.

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Pulmonary Fibrosis Foundation Educates Patients on Supportive Care and Treatments for International Quality of Life Month

Living with a disease like pulmonary fibrosis (PF) can often be isolating, and without adequate supportive care resources, patients living with all forms of PF may not have the tools to maximize quality of life. There are several supportive care and therapy treatments that can be transformative in the lives of patients and, more importantly, can offer them the hope, determination, and inspiration to live each day to the fullest.

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Woman walks from Wisconsin to Port Aransas

PORT ARANSAS, Texas — It was a successful completion of the journey of a lifetime. As Mary Hesch completed a 1,450 mile walk from Wisconsin. The walk ended in Port Aransas.

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International Quality of Life Month: How Patients with PF Live Life to the Fullest

Living with a disease like pulmonary fibrosis (PF) can be isolating, and without adequate supportive care resources, patients living with all forms of PF may not have the tools to live life to the fullest.

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The PFF Celebrates Black History Month with Inspiring Stories, Highlights Need for Diversity in Research

This year’s theme for Black History Month is “Black Health and Wellness,” which provides an important opportunity to consider how to decrease health disparities in care. In the case of pulmonary fibrosis (PF) — a progressive, debilitating lung disease that causes scarring in the lungs — recent studies suggest the need for additional research with diverse patient populations to better understand the disease and treatment options.

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OU Health joins Pulmonary Fibrosis network

Americans living with pulmonary fibrosis, a life-threatening lung disease, have gained access to specialized care through the Pulmonary Fibrosis Foundation’s Care Center Network, which recently announced that six new sites, including OU Health in Oklahoma City, have joined. The goal of the network is to help diagnose, treat, and provide support for more than 250,000 Americans living with pulmonary fibrosis.

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See Julie Halston, Lilli Cooper, Santino Fontana, and More at Broadway Belts for PFF!

The Pulmonary Fibrosis Foundation hosted their annual Broadway Belts for PFF! on February 25, hosted by Broadway legend Julie Halston, who will appear on Broadway later this season in Tootsie.

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Woman finishes 99 day walk from Wisconsin to Port Aransas

Officially crossing the finish line after 99 days, five states and 14 hundred miles later, 60-year-old Mary Hesch of Stevens Point, Wisconsin was met by all of her family and friends in Port Aransas.

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Woman concludes 1,400-mile walk in Port Aransas to raise awareness of pulmonary fibrosis

Mary Hesch started a 107-day walking journey in Stevens Point, Wisconsin, on Sept. 15 to raise awareness of pulmonary fibrosis and money for the Pulmonary Fibrosis Foundation. Surrounded by her family and friends, Hesch finished the five-state, 1,400-mile trek Dec. 30, 2021, on the beach in Port Aransas.

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Woman walks over 1,400 miles to honor her late mother and raise awareness of pulmonary fibrosis

Along a windy stretch of Texas highway, a woman walks with purpose. Mary Hesch is on a 1,439-mile pilgrimage from central Wisconsin to the Texas coast -- all of it on foot -- to honor her mother and raise awareness of the lung disease that took her life.

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Wisconsin woman walking to Texas in honor of late mother, raising funds for lung disease

Wisconsin woman is walking for 99 days through 5 states to help those who are suffering from the disease that took her mother’s life. 60-year-old Mary Hesch set off from her home in Stevens Point on September 15 to start her journey to the ocean in Port Aransas, Texas.

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TV And Broadway Actress Julie Halston To Receive Tony Award For Advocacy Work In Support Of Pulmonary Fibrosis Foundation

Actress and comedienne, Julie Halston, a dynamic advocate for people living with pulmonary fibrosis, will receive the 2020 Isabelle Stevenson Tony Award on Sunday, Sept. 26, in recognition of her charitable work for the Pulmonary Fibrosis Foundation (PFF).

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Tony Awards recognize Julie Halston for her pulmonary fibrosis advocacy

Broadway actor Julie Halston is a Tony Award winner — earning an honor from the American Theatre Wing for her advocacy efforts. Halston and her husband, Ralph Howard, founded Broadway Belts for PFF after he was diagnosed with the lung disease.

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Focus on “Growing Stronger” for Pulmonary Fibrosis Awareness Month in September

Newswise — September is Pulmonary Fibrosis Awareness Month, presented by the Pulmonary Fibrosis Foundation (PFF) as a way to drive awareness of pulmonary fibrosis (PF). PF is a progressive, debilitating disease characterized by scarring in the lungs that affects more than 250,000 people in the U.S.

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