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Increasing Awareness

Bringing pulmonary fibrosis to the forefront

One of the greatest challenges for the pulmonary fibrosis community is the lack of awareness and understanding of the disease. To achieve better outcomes for patients, we’re actively supporting awareness programs; educating all stakeholders to improve diagnosis and treatment; and working to increase funding for breakthrough discoveries, new treatments, and clinical research.

ABOUT 50,000 
U.S. PATIENTS
ARE DIAGNOSED
WITH IPF EVERY YEAR

AN ESTIMATED 35% OF
INITIAL DIAGNOSES
OF IPF ARE INCORRECT

OVER 5 MILLION
WORLDWIDE
ARE AFFECTED BY PULMONARY FIBROSIS

Driving public awareness

Pulmonary fibrosis symptoms often mimic those of other diseases, resulting in delayed diagnoses. This wastes critical time for patients who may benefit from the clinical programs that are designed to maintain health and preserve quality of life. That’s why we’re partnering with the Pulmonary Fibrosis Foundation to build a public awareness campaign. Together, we aim to promote understanding of pulmonary fibrosis symptoms and mobilize more people and resources to improve time to diagnosis.

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Advocating for better oxygen access

For most people living with pulmonary fibrosis, supplemental oxygen at some point becomes an important therapy. The right oxygen equipment is often difficult to obtain, for a variety of reasons, especially as therapeutic needs increase. Three Lakes Foundation and the Pulmonary Fibrosis Foundation are working with leaders in the lung health community to develop creative solutions to improve access to supplemental oxygen. This includes partnering with other organizations interested in long-term oxygen therapy programs, and participating in foundation, government, policy and advocacy initiatives.

BAYLOR, SCOTT & WHITE ADVANCED HEART AND LUNG DISEASE CENTER PROGRESSIVE FIBROSING/INTERSTITIAL LUNG DISEASE SUPPLEMENTAL CARE PROGRAM

Patients and their families are often surprised by a PF diagnosis, and want to know what’s next. The emotional challenges and the learning curve related to this disease can be overwhelming. To empower individuals living with PF to share in their care and ultimately improve outcomes, we are working with clinic staff and an advisory team made up of expert nurses, patients, and caregivers to design and pilot test a new clinical care process that benefits from additional support in the clinic as well as peer-to-peer support at home.

PF WARRIORS SUPPORT GROUP

Individuals affected by pulmonary fibrosis face issues and obstacles throughout their disease journey. The PF Warriors know that this disease affects the people surrounding the patient, too. Three Lakes Foundation believes in the value of peer-to-peer support and applauds the variety of programming that the PF Warriors are able to provide to their members. Our grant helps them to continue to reach new families around the world and plan for the future of the organization.

UNIVERSITY OF PITTSBURGH DOROTHY P. AND RICHARD P. SIMMONS CENTER FOR INTERSTITIAL LUNG DISEASE at UPMC SUPPORT TOOL - RESOURCE FOR NEWLY DIAGNOSED PATIENTS

Three Lakes Foundation supported the research program of Dr. Kathleen Lindell, an internationally recognized authority in palliative care, and her work studying the use of a nurse-led intervention called, "A Program of SUPPORT" (Symptom Management, Understanding the Disease, Pulmonary Rehabilitation, Palliative Care, Oxygen, Research, Transplant) that facilitates learning about IPF to increase knowledge and disease preparedness. The SUPPORT book and related process has since been revised and is in the process of being evaluated in different delivery modes (including Telehealth) and in other advanced lung diseases.

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AMERICAN LUNG ASSOCIATION SUPPLEMENTAL OXYGEN REFORM CAMPAIGN

Three Lakes Foundation has collaborated with the ALA and leaders in the lung health community to improve patient access to appropriate supplemental oxygen equipment. This has included supporting a significant advocacy effort on Capitol Hill and working with the Centers for Medicare and Medicaid Services — work that laid the foundation for a proposed advocacy campaign to improve patient quality-of-life issues, fighting to ensure all patients have access to the liquid oxygen they need.

AMERICAN LUNG ASSOCIATION PATIENT SUPPORT INITIATIVES

Three Lakes Foundation assisted in the development of training programs and other educational materials designed to instruct patients in the safe use of supplemental oxygen therapy. This initiative included supporting an IPF awareness pilot at the 2018 Philadelphia LUNG FORCE Expo, a local education event for health care professionals, patients, and their caregivers to learn more about lung health issues.