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Support for PF Patients and Families
Join the PFF's New Online Support Community
 Over 400 patients, caregivers, family members, and loved ones have joined the Pulmonary Fibrosis Foundation's new online support community on Inspire. Don't miss any of the helpful and informative conversation - join today!New Local Support Group - Texas
Seton Southwest Hospital
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Father's Day Tribute
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Bill Torres recently ran in the LA Marathon in memory of his father, Mario Torres
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Father's Day is June 17, 2012. Honor all fathers by making a donation as a tribute to your father or a father you know. Then, on Father's Day, post a picture of your father on the PFF Facebook page.
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Update on Hélène Campbell
In her first public appearance since her surgery, 21-year-old, double-lung transplant recipient Hélène Campbell recently held a press conference about her journey and work promoting organ donation. The Canadian Prime Minister Stephen Harper awarded Ms. Campbell with the Diamond Jubilee Medal for her work raising awareness about organ donation and her personal courage in her fight against idiopathic pulmonary fibrosis (IPF).
The PFF has been following Hélène's exciting journey closely since interviewing her for the Spring 2012 Breathe Bulletin. Read Hélène's interview today and share it with a friend: pulmonaryfibrosis.org/breathebulletin.
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Upcoming Team PFF Events
Team PFF fundraisers are off to a strong start this summer, hosting events that have raised thousands! There are many events to come - find an event in your area or find inspiration for creating your own.
Upcoming events include:
- June 15: Wasatch Back - Ragner Relay Series
- June 30: A Night with Family and Friends at the Old Ball Park
- July 7: 7th Annual Barbara A. Fiorillo Memorial Bike Run/Picnic
- July 8: New York City Triathlon presented by RCN
- July 13: 2nd Annual George Lujan Memorial Softball Tournament
- July 14: 2nd Annual Richard G. Hall Memorial Golf Tournament
- July 15: 10th Annual Mossman Sprint Triathlon
- July 22: 4th Annual Joseph S. Lore Memorial Golf
- July 22: Team Breathe On Runs the Rock 'n Roll Half Marathon
Inspired by the event leaders, fundraisers, and athletes working to support the Foundation's mission, Team PFF unites, connects, and inspires the pulmonary fibrosis community to fundraise and make a difference today. Team PFF encourages every individual to help in any way he or she can. Learn more about how you can get involved at www.pulmonaryfibrosis.org/teampff.
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PFF Legislative Advocacy Update
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The PFF Staff has been working tirelessly to form key partnership and push passage of legislation like S. 3187 and H.R. 5651
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Last month, legislation invaluable to families affected by rare diseases passed by the U.S. Senate and U.S. House. The FDA Safety & Innovation Act of 2012 (S. 3187) and FDA Reform Act of 2012 (H.R. 5651) will enhance the regulatory process at FDA, and includes $6.4 billion in funding for new medicine and device reviews through 2017.
The National Organization for Rare Disorders says this legislation contains the most comprehensive improvements to public policy for rare disease therapies since the landmark Orphan Drug Act of 1983.
For other advocacy updates and breaking news in the PFF community, please visit: http://pulmonaryfibrosis.org/news.
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