The PFF was established in Denver by Albert Rose and Michael Rosenzweig after they lost their sister to the disease. Albert pledged $1 million to start the Foundation, and this commitment is memorialized today through the PFF’s planned giving program, the Albert Rose Legacy Society.
The PFF remains headquartered in Chicago.
Leanne Storch, who was diagnosed with idiopathic pulmonary fibrosis, joined the PFF as a volunteer. Leanne worked with Michael Rosenzweig as a liaison for patients and their families. She became the Executive Director of the PFF. The Leanne Storch Support Group Fund was established in 2012 to honor her extraordinary commitment to patient support.
"Broadway Belts for PFF!" was created by actress and comedienne, Julie Halston, her late husband, Ralph Howard, and others in the Broadway community. The event honored acclaimed theater critic, Micheal Kuchwara, who succumbed to IPF. BB for PFF has become the single largest fundraiser for the PFF. r story info here
The first PFF Summit was held in Chicago. The biennial conference, the only one of its kind focused solely on PF, welcomed hundreds of patients, caregivers, researchers, healthcare professionals and industry partners.
The PFF Care Center Network (CCN) was established with nine medical centers that provide comprehensive care and support to people living with PF. Today, the CCN includes 81 centers and 7 clinical associates in 39 states.
The FDA approved nintedanib and pirfenidone to treat IPF. This major advancement led the Foundation to begin new partnerships with Boehringer Ingelheim and Genenteche, a member of the Roche Group. Through these partnerships, the Foundation launched the PFF Ambassador Program and Help Center.
The PFF Patient Registry began enrolling patients to gather data and blood samples to advance research for better therapies and a cure. The Registry achieved its enrollment goal of 2,000 patients in 2018.
The first PFF Walk in Chicago raised funds and visibility as the centerpiece of Pulmonary Fibrosis Awareness Month in September. The Walk has expanded to New York City, Pittsburgh, Washington D.C., Dallas, San Francisco, and a virtual National Walk Day in September.
The PFF revamped its research grant program with PFF Scholars to allow more early-stage researchers to study PF.
