American Lung Association stepping up the fight against lesser known Idiopathic Pulmonary Fibrosis, or IPF
The American Lung Association and Three Lakes Partners to educate, advocate and raise awareness of this serious, life-threatening lung disease
(September 21, 2017) - CHICAGO
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Pulmonary fibrosis is a disease affecting more than 140,000 Americans that interferes with a person's ability to breathe and gets progressively worse over time – with most succumbing to the disease three to five years after diagnosis. About 100,000 cases of the disease have no known cause, and are referred to as idiopathic pulmonary fibrosis or IPF. During September's Pulmonary Fibrosis Awareness Month at the European Respiratory Society's International Congress, the American Lung Association and Three Lakes Partners announced their partnership to accelerate the development of resources for individuals living with IPF, their loved ones, and their healthcare teams.
"IPF is a challenging and unpredictable disease, and not knowing how or why it occurs can delay treatment and support for patients," says American Lung Association National President and CEO Harold P. Wimmer. "There are not enough resources nor attention dedicated to IPF. We intend to create a hub of information and a supportive community to raise awareness and to advocate for and improve the quality of life for patients and caregivers affected by this destructive, incurable lung disease."
Causing irreversible scarring of the lungs, pulmonary fibrosis, including IPF, is unique to each individual and can develop quickly or stay stable for many years. Through this new partnership, the American Lung Association will build an online platform with resources and support for individuals throughout their journey with IPF. The new digital assets will provide information on symptoms and diagnosis, treatment options and clinical trials, patient resources and ways to improve day-to-day quality of life – for anyone living with, caring for or treating someone with IPF.
"When I was diagnosed with IPF, I was told that I should get my affairs in order because I had two to three years left," remembers Bill Vick, age 74. "There was no follow-up information, and when I tried to do my own research – it was an information desert. The problem is that there is so much complex and convoluted information about IPF. Despite the dim prognosis my doctor gave me, I've been living with this incurable disease for six years since being diagnosed, and most likely 10 years prior to my diagnosis.
"Rather than ignoring the thousands of us living with IPF, we need to inspire people that through greater awareness, early diagnosis and better information – we can give hope of life."
While there is no cure for pulmonary fibrosis or IPF, there are ways to slow the course of the disease, relieve symptoms and help individuals stay active and healthy. To support individuals, the American Lung Association has online, in-person and telephonic support from respiratory therapists through: the toll-free Lung HelpLine (1-800-LUNGUSA), community-based Better Breathers Clubs and the "Living with Pulmonary Fibrosis" and "Caring for Pulmonary Fibrosis" online social support communities.
"Unfortunately for patients, IPF remains a disease that receives little attention, resulting in a lack of innovative solutions, research and patient resources that are desperately needed," says Elizabeth Estes, Chief Marketing Officer at Three Lakes Partners. "Collaboration is at the heart of our mission, and we will be working closely with the American Lung Association and others to bring much needed resources and increase awareness of this devastating disease."
In addition to building the new online platform, the Lung Association will be represented by Wimmer on the panel of judges for Three Lakes Partners' IPF Catalyst Challenge which will award a total of $1,000,000 for the development of up to three big ideas that improve the quality of life for IPF patients and their caregivers. Innovators and entrepreneurs across the tech, healthcare, scientific research and other communities are encouraged to participate by visiting Challenge.IPFCatalyst.com.
For media interested in learning more about pulmonary fibrosis and IPF, or to talk to a medical practitioner or Bill Vick, contact Allison MacMunn at the American Lung Association at Media@Lung.org or 312-801-7628.
About the American Lung Association
The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy. The work of the American Lung Association is focused on four strategic imperatives: to defeat lung cancer; to improve the air we breathe; to reduce the burden of lung disease on individuals and their families; and to eliminate tobacco use and tobacco-related diseases. For more information about the American Lung Association, a holder of the Better Business Bureau Wise Giving Guide Seal, or to support the work it does, call 1-800-LUNGUSA (1-800-586-4872) or visit: Lung.org.