Former New York Yankees baseball player Bernie Williams joined the Pulmonary Fibrosis Foundation (PFF) recently as they lobbied members of Congress to raise awareness about the impact idiopathic pulmonary fibrosis (IPF) has on patients and families.
“My father passed away from idiopathic pulmonary fibrosis and I’m eager to raise awareness of the disease,” Williams said in a press release. “He taught me everything I know about life and baseball. I saw my father as an indestructible presence, but his condition was not curable and it took his life.”
The baseball legend, who also is a musician, lent his voice to that of patients, families and caregivers from 14 U.S. states to advocate among 54 lawmakers on Capitol Hill in Washington, D.C., for better understanding of IPF. Specifically, the group asked the congressmen to support IPF by increasing the research budget for the National Institutes of Health (NIH) by $2 billion in 2018. They also asked for a raise of $2.8 billion in the budget allocated to the U.S. Food and Drug Administration (FDA) for the development of safe and effective therapies for PF patients.
“There has been bi-partisan support for medical research,” said Terence Hales, member of the PFF board of directors. “Already, research has led to two treatments to slow the progression of pulmonary fibrosis, but we need more. Now is the time to expand our advocacy efforts and we are doing exactly that.”
PFF’s commitment to fighting for better patient care and improved research in PF includes establishing collaborations with other entities. PFF volunteers, for instance, will join the EveryLife Foundation for Rare Diseases’ In-District Lobby Days, an initiative that promotes meetings with U.S. Senators and Representatives in their district offices during Congress’ summer recess.
The foundation also will share stories from PFF volunteers with policymakers in September, which is Pulmonary Fibrosis Awareness Month. There will be a session on legislative advocacy at the PFF’s 2017 Summit, to be held in Nashville, Tennessee, Nov. 9-11.
Williams became an advocate for IPF in 2001, after his father died of this disease at 73 years old. The Yankees’ former center-fielder player also has partnered with Boehringer Ingelheim Pharmaceuticals to promote its Breathless campaign to raise awareness about IPF.
Williams recently wrote a guest column for Pulmonary Fibrosis News sharing his story about his father to inspire readers and support awareness and fundraising to fight IPF.