Pulmonary Fibrosis Foundation Launches Partnership with Inspire Online Support Community
Foundation Announces Suite of Complementary Initiatives for Patients and Caregivers to Provide Enhanced Resources and Support
CHICAGO, May 14, 2012 /PRNewswire/ -- With no FDA-approved treatment or cure for pulmonary fibrosis (PF), support groups are an important aspect to providing patients and families with a forum to improve their lives while living with the disease. Providing accessibility and improving opportunities for individuals to build their network of support, share common experiences, and take comfort in a community that understands the impact of pulmonary fibrosis is a fundamental goal of the Pulmonary Fibrosis Foundation (PFF).
Invested in the benefits of support, and committed to providing access to all those affected by this disease, the Pulmonary Fibrosis Foundation is proud to announce its partnership with the Inspire online support group community. Inspire was chosen to be the PFF's new online platform for its functionality, access, privacy controls, and services. Dolly Kervitsky, RCP, CCRC, the Foundation’s Vice President of Patient Relations, views the partnership as a lasting investment with a far-reaching purpose. “Improving patient support and educational resources is the first step in better educating the rest of the population,” Kervitsky says. “Through well run support groups and the knowledge shared there, patients and caregivers gain the ability to become their own advocates and educate others in their community.”
Inspire partners with only the most respected national patient advocacy organizations and has more than 75 exclusive national patient organization partnerships. It has created the most authentic platform for patient engagement available and has over 240,000 members. Provided free of charge to patient organizations and support group members, Inspire was founded on the philosophy that patient contributions to medical progress have been historically underappreciated, and that great progress in medical research will result from involving patients and fully valuing their contributions.
A trusted forum, Inspire is easy-to-use and offers patients and caregivers a safe, secure place to connect, collaborate, share information, and find emotional support from other members of the PFF community. Moderated by staff members at the PFF and Inspire, this new platform will allow for enhanced discussion among members as well as access to other relevant health and wellness forums and Inspire's Clinical Trial Program. The PFF Support Community and technical support are available for patients and caregivers 24 hours a day, 7 days a week. These features, and more, are coupled with an inviting and easy-to-navigate design that makes joining and participating in the PFF Support Community on Inspire quick and simple. To join Inspire, visit http://www.inspire.com/partners/pulmonary-fibrosis-foundation/.
Complementary PFF Support Initiatives Announced: Leanne Storch Support Group Fund, PFF Support Group Leader Network, and PFF Remote Support Group Network
In-person support groups have long been the gold standard in the support group community. These groups are led by committed community volunteers and healthcare providers who have dedicated their time, energy, and passion to truly make a difference in the PF community. The PFF is dedicated to providing and improving programming and access to in-person support groups and has developed initiatives to improve and enhance funding, leadership, and accessibility. “Tapping into the support of individuals who share an understanding of pulmonary fibrosis and its life changing impact is a key element of coping,” says Daniel M. Rose, MD, President and Chief Executive Officer of the PFF. “Meeting other patients and caregivers has helped my family in their experience with this disease. Our goal is to provide multiple platforms of support so that every member of the PFF community has access to the help they need."
Announced at the PFF's tenth anniversary dinner last December, the Leanne Storch Support Group Fund was created to assist leaders in providing meaningful educational events through awards of up to $500. Leanne Storch, the Foundation’s former Executive Director, was diagnosed with pulmonary fibrosis in 2003; the Fund honors her continued passion for supporting those affected by the disease by promoting the efforts of support group leaders worldwide. Groups may apply for awards of up to $500 per award year, to be used towards meeting programming, educational materials, or location requirements. Up to 8 awards will be granted in 2012, and 8 additional awards will be granted in 2013. The application deadline for 2012 awards is September 1, 2012.
The PFF Support Group Leader Network has been developed for leaders to share tips and best practices through PFF-facilitated quarterly conference calls and monthly e-updates. Also, the PFF Support Group Leader Network offers advice and information for new leaders including the PFF Support Group Leader Guide. “The PFF's Support Group Leader Network is testimony to the Foundation's appreciation of all of our volunteer support group leaders. We want to provide them with as many tools and as much expertise as possible to promote their enormous impact on the PFF community,” says Kervitsky.
Finally, because the PFF believes access to support groups should be available to everyone, regardless of location or technological know-how, the PFF is pleased to offer the PFF Remote Support Group Network. The network will allow patients and family members the opportunity to participate in a professionally led support group virtually, by phone or computer connection. To learn more about the PFF's support initiatives, visit www.pulmonaryfibrosis.org/supportgroups or call 888.733.6741.
About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. December 1-3, 2011 the PFF hosted its first biennial international scientific conference, IPF Summit 2011: From Bench to Bedside, in Chicago; PFF Summit 2013 will be held December 5-7, 2013. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741.
About Dolly Kervitsky, RCP, CCRC
Dolly Kervitsky RCP, CCRC is the Vice President of Patient Relations at the Pulmonary Fibrosis Foundation. Ms. Kervitsky joined the Foundation in 2010 after 30 years at National Jewish Health in Denver, Colorado. She began her respiratory therapy career as a Staff Respiratory Therapist in the Medical, Pediatric, and Burn, and Trauma Intensive Care Units at the University of New Mexico. In 1981, Ms. Kervitsky joined National Jewish Health as a Staff Respiratory Therapist; in 1982, she was named Acting Director of the Respiratory Therapy Department. In 1983 she began working with pulmonary fibrosis patients and researchers as the Clinical Coordinator for the National Institutes of Health (NIH) funded Specialized Center of Research investigating idiopathic pulmonary fibrosis. This NIH project was instrumental to the development of the Interstitial and Autoimmune Lung Disease Program at National Jewish Health where Kervitsky was named the Program Manager in 1992. In 2008, Ms. Kervitsky founded the Genetic Counseling Program for Familial Pulmonary Fibrosis at National Jewish Health. She has served as lead coordinator and steering committee member for several international multi-center research trials. Additionally, Ms. Kervitsky is a member of the American Thoracic Society, American College of Chest Physicians, Association of Respiratory Care, and the Association of Clinical Research Professionals.
About Leanne Storch
Leanne Storch has provided support and leadership to the pulmonary fibrosis community since 2004 when she joined the Pulmonary Fibrosis Foundation (PFF) as Assistant to the President. Diagnosed with the disease in January of 2003, her role at the Foundation included providing support to patients and families affected by pulmonary fibrosis. In 2006, Ms. Storch was promoted to Patient Advocate, and in 2008 she became the Foundation’s Executive Director and served in the position until 2010. Ms. Storch is a support group leader and has given countless hours of guidance to patients across the globe and to other pulmonary fibrosis support groups. Leanne continues to provide support to the PFF and the PF community as a consultant to the Foundation on patient concerns.
About Idiopathic Pulmonary Fibrosis
According to the National Institutes of Health, 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 criteria are met) the disease is called idiopathic pulmonary fibrosis, or IPF. IPF affects approximately 200,000 individuals in the US, and the annual mortality is estimated to be 40,000. At present there are no FDA-approved medical therapies.
Vice President, Patient Relations
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