PFF In The Media

Jane Jackman shares what it's like living with pulmonary fibrosis | Community Voices

Jane Jackman is a Springfield resident with years of experience working in the medical field as a physician. She spoke to Community Voices about her diagnosis of idiopathic pulmonary fibrosis, which is a disease that causes scarring of the lungs making it increasingly difficult for patients to breath as the disease progresses. Fortunately Jackman received a much-needed lung transplant, and now she speaks on the need for more research and treatment of pulmonary fibrosis.

Link to Article

BROADWAY BELTS FOR PFF! Gala Featuring Julie Halston, Telly Leung, Beth Leavel & More Raises Record $475,000

The Pulmonary Fibrosis Foundation's 12th annual Broadway Belts for PFF! raised a record $475,000 in a new hybrid format on April 29. The sold-out gala at New York City's Edison Ballroom, live streamed for the first time, is the single largest fundraiser in the Foundation's history.

Link to Article

Broadway Belts for PFF! Raises Record $475,000

The Pulmonary Fibrosis Foundation’s (PFF) 12th annual Broadway Belts for PFF! raised a record $475,000 in a new hybrid format on April 29. The sold-out gala at New York City’s Edison Ballroom, live streamed for the first time, is the single largest fundraiser in the Foundation’s history.

Link to Article

National Minority Health Month: Changing the Conversation Around Minority Health Research and Disparities

April is National Minority Health Month, a time to raise awareness about health disparities that continue to affect racial and ethnic minority populations. It is a time to encourage action through health education, early detection, and control of disease complications. One way to improve health outcomes for minority populations is through inclusion in research.

Link to Article

Lillias White, Beth Leavel, Ann Harada, More Announced for 12th Annual Broadway Belts for PFF!

Tony recipient Julie Halston (Sex and the City, Gossip Girl, Tootsie) will emcee the 12th annual Broadway Belts for PFF!, a benefit to support the Pulmonary Fibrosis Foundation. The hybrid event will occur simultaneously in New York City's Edison Ballroom and online April 29.

Link to Article

Beth Leavel, Lillias White, and More Announced for BROADWAY BELTS FOR PFF

Tony Award-winning actress and comedienne Julie Halston (Sex and the City, Gossip Girl, Tootsie) will emcee the 12th annual Broadway Belts for PFF!, an unforgettable evening of entertainment featuring some of Broadway's hottest stars. This year's hybrid event will take place live at New York City's Edison Ballroom and virtually on Friday evening, April 29, 2022. The event is the single largest fundraiser for the Pulmonary Fibrosis Foundation (PFF).

Link to Article

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.

Link to Article

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).

Link to Article

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.

Link to Article

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.

Link to Article

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.

Link to Article

National Donor Day: Receiving the Gift of Life – and a Breath of Fresh Air – Thanks to Organ Donation

National Donor Day (Feb. 14) was created more than 20 years ago to focus on five points of life: organs, tissues, marrow, platelets, and blood. Many groups use this day to sponsor blood and marrow drives and organ/tissue donation sign-up events.

Link to Article

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.

Link to Article

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.

Link to Article

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.

Link to Article

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.

Link to Article

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.

Link to Article

The Insidious Interstitial Lung Disease

Interstitial lung disease (ILD) is an umbrella term for a large collection of connected lung problems that affect the interstitium, the tissue surrounding air sacs, blood vessels, and airways in the lungs.

Link to Article