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Contact: Dorothy Coyle, 773-332-6201

 

PULMONARY FIBROSIS COMMUNITY LOBBIES LAWMAKERSTO SUPPORT FEDERAL FUNDING

 

 

New York Yankees Legend Bernie Williams Shares His Father’s Story

 

Chicago, June 15, 2017 – Four-time World Series champion Bernie Williams joined in the Pulmonary Fibrosis Foundation’s (PFF) recent advocacy session with Capitol Hill legislators to explain how the deadly lung disease is impacting families and communities across the nation.

 

“My father passed away from idiopathic pulmonary fibrosis and I’m eager to raise awareness of the disease,” said Williams. “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.”

 

In May 2001, Bernabe Williams Sr. succumbed to the disease at 73. Bernie Williams’ subsequent advocacy has included partnering with Boehringer Ingelheim Pharmaceuticals, Inc. on its recent Breathless

campaign aimed at raising awareness of idiopathic pulmonary fibrosis.

 

During the PFF’s inaugural Hill Day, patients, caregivers and family members from 14 states met with 54 elected lawmakers to report how the devastating disease affects their constituents and their districts. The team asked Congress to:

 

• Support PF research by prioritizing funding of a $2 billion increase in the Fiscal Year 2018 (FY18) budget for the National Institutes of Health (NIH)

• Develop safe and effective PF therapies by supporting a $2.8 billion appropriation for the Food and Drug Administration (FDA) in the FY ’18 budget.

 

“There has been bi-partisan support for medical research. Already, research has led to two treatments to slow the progression of pulmonary fibrosis, but we need more,” said PFF Board member, Terence Hales. “Now is the time to expand our advocacy efforts and we are doing exactly that.”

 

The PFF has developed an advocacy infrastructure to create partnerships with other health organizations. These entities will broaden outreach and strengthen the cause for research to benefit the PF community. For example, the PFF is signing on to the Cystic Fibrosis Foundation’s letter to the Senate leadership in support of Medicaid as the Senate considers healthcare reform.

 

During Congress’s summer recess, PFF volunteers will participate in the EveryLife Foundation for Rare Diseases’ In-District Lobby Days.

 

Stories from PF volunteers also will be shared with policy makers in September during Pulmonary Fibrosis Awareness Month. The PFF will host a training on legislative advocacy at its biennial Summit, Nov. 9-11, in Nashville, Tenn.

 

Over the past decade, the PFF has awarded $4 million in research awards, resulting in over $95 million in associated NIH funding. In addition, the PFF has testified in numerous FDA hearings to expand resources and treatments for patients with PF.

 

Pulmonary fibrosis affects over 200,0000 Americans and results in more than 40,000 deaths annually.

 

About the Pulmonary Fibrosis Foundation 
The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis (PF) will live longer, healthier lives. The PFF collaborates with physicians, organizations, people with PF and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity. The PFF Summit 2017, its fourth biennial international health care conference, will be held November 9-11, 2017 in Nashville, Tennessee. For more information, visit  pulmonaryfibrosis.org or call 844.TalkPFF  (844.825.5733) or  +1 312.587.9272 from outside the U.S.