SEPTEMBER IS GLOBAL PULMONARY FIBROSIS AWARENESS MONTH

Sep 2, 2014, 15:28 PM
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FOR IMMEDIATE RELEASE

Media Inquiries:
Michelle Michael
VP, Marketing & Communications
312-239-6628
mmichael@pulmonaryfibrosis.org

Other Inquiries:
PFF Patient Communication Center
844.TalkPFF (844.825.5733)
pcc@pulmonaryfibrosis.org

                       

SEPTEMBER IS GLOBAL PULMONARY FIBROSIS AWARENESS MONTH
Mayor Rahm Emanuel declares September Global Pulmonary Fibrosis Awareness Month in Chicago--The Pulmonary Fibrosis Foundation sponsors events to enhance disease awareness and provides patient and caregiver feedback to the FDA

CHICAGO, September 2, 2014/PR Newswire/-- The Pulmonary Fibrosis Foundation (PFF) launches a full month of events and initiatives for September’s Global Pulmonary Fibrosis (PF) Awareness Month, starting with a proclamation by Chicago’s mayor; surpassing a milestone in collecting PF patient and caregiver survey data; and the pulmonary fibrosis community embracing PF social media as it showcases images of blue hair and global “selfies” to display “where in the world is PF awareness.”

This month of recognition for patients living with PF centers on a serious disease. PF is a condition in which the lung tissue becomes thickened, stiff and scarred, making it progressively difficult for the lungs to transfer oxygen into the bloodstream. In most cases, the cause remains unknown (idiopathic).

“Idiopathic pulmonary fibrosis affects approximately 200,000 people in the United States. It is extremely deadly with an average life expectancy of only two to four years from the time of diagnosis,” PFF Chief Executive Officer Daniel M. Rose, MD said. “An estimated 40,000 Americans die each year from this disease.”

Proper diagnosis coupled with individualized treatment can help patients cope with PF as researchers continue to seek treatments to slow the progression of the disease and eventually find a cure.“While it’s important to raise awareness about PF every day, Global Pulmonary Fibrosis Awareness Month offers an opportunity for all members of the PF community—patients, caregivers, family, friends and healthcare providers—to come together with one collective voice, increasing awareness and support,” PFF President and Chief Operating Officer Patti Tuomey, EdD, said.

Highlights of Global Pulmonary Fibrosis Awareness Month activities include:

  • Blue it Up or Pay it Up—Building on a fundraising challenge established last year by PFF Ambassador Diane Reichert, “Blue it Up or Pay it Up” participants color their hair with a streak of blue, make a donation to the PFF, or both. This week, the Yale School of Medicine’s Pulmonary, Critical Care and Sleep Medicine Section will “Blue it Up and Pay it Up”, with Section Chief Naftali Kaminski, MD, pledging to increase his gift to PFF for each person on his team participating. Yale is the first PFF Care Center Network site to build on Diane’s program. Follow the awareness and fundraising program on social media #BlueUp4PF.
  • Social media awareness —Join the PFF on Facebook, Twitter, Instagram and LinkedIn, where the PF community engages with the PFF this month on Global Pulmonary Awareness Month. Using hashtags #globalPFawareness, #PulmonaryFibrosis and #BlueUp4PF, find selfies of supporters around the globe wearing PFF bracelets showing where in the world is PF awareness; “Just Blue it Up or Pay it Up” videos; and learn about PF with“30 Facts in 30 Days.”
  • PFF patient and caregiver survey surpasses a milestone—Exceeding more than 1,000 responses in less than four weeks, the PF community rallied to participate in the PFF’s groundbreaking patient and caregiver survey. This data will help inform the US Food and Drug Administration (FDA) about what matters in drug therapies and will help shape future PFF programming. While the PFF patient and caregiver survey continues through the end of 2014, an interim report will be presented to the FDA on September 26 for the Patient-Focused Drug Development meeting. The meeting is a new FDA initiative to directly obtain feedback from patients and caregivers that will then assist the FDA on how to better evaluate potential therapies and perform clinical trials.
  • PFF Ambassadors spread the word—Launched this summer, the PFF Ambassador Program empowers patients, caregivers and health care professionals to become spokespersons for the PF community. PFF Ambassadors share current disease information, personal stories and inspiration with audiences across the country and are available all year round for speaking engagements.
  • Promoting the benefits of O2—“Tools for Living Better with PF: Supplemental Oxygen”—part of the PFF’s popular Disease Education Webinar Series—was inspired by PF patients. In order to help dispel some of the social stigmas and self-consciousness of wearing oxygen, the PF community rallied by posting “selfies” of patients wearing oxygen in public. This webinar highlights the benefits of using oxygen when indicated.

Team PFF rallies from coast to coast—From walks and wine tastings to art shows and raffles, Team PFF members across the country host diverse special events as part of Global PF Awareness Month, many in honor of loved ones.

To learn how you can become involved with Global Pulmonary Fibrosis Awareness Month, donate to the Foundation or to inquire about PF educational resources, contact the PFF Patient Communication Center (PCC) at 844.TalkPFF (844.825.5733).

Visit www.pulmonaryfibrosis.org/get-involved/attend-an-event for a complete calendar of Global Pulmonary Fibrosis Awareness events.

About the Pulmonary Fibrosis Foundation

The mission of the Pulmonary Fibrosis Foundation (PFF) is to serve as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, and funding research. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity. PFF Summit 2015: From Bench to Bedside, the PFF’s third biennial international health care conference, will be held November 12-14, 2015 in Washington, DC. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741 or +1 312.587.9272 from outside of the US.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. IPF affects between 132,000-200,000 people in the United States (US), and between 37,000-40,000 people in the European Union (EU). The annual mortality is estimated to be 40,000 in the US, with an average survival of 2–3 years following diagnosis. There is no cure for IPF. There is presently no FDA-approved treatment for IPF in the US and limited therapeutic options available for individuals with mild-to-moderate IPF in the EU, Canada, and Asia.


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