3 posts tagged “Pulmonary Fibrosis Foundation”

Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation

Posted September 26th, 2016 by

September is Global PF Awareness month, and a few weeks ago,  members of the PatientsLikeMe PF community helped us kick it off by sharing in their own words what it’s like to live with this condition. The month is winding down now, so we caught up with our partners at the Pulmonary Fibrosis Foundation (PFF) to learn more about the latest research as well as a new national registry for PF patients. Below, check out our recent interview with Dr. Gregory Cosgrove, Chief Medical Officer at the PFF, and see what he has to say about the future of PF treatment.

Tell us a little about the Pulmonary Fibrosis Foundation— how did you get started with it?

I feel very fortunate to be a part of a team of dedicated medical experts, staff, and volunteers who devote their time and effort to advancing the Pulmonary Fibrosis Foundation’s (PFF) mission. Two brothers, Albert Rose and Michael Rosenzweig, PhD, founded the PFF in 2000 after losing their beloved sister Claire to PF. Both brothers were also diagnosed with the disease and subsequently passed away. Their vision and dedication continues to inspire us to support the Foundation’s mission to mobilize people and resources to provide access to high quality care and lead research for a cure so people with pulmonary fibrosis will live longer, healthier lives.

Since 2014, I’ve had the wonderful opportunity to serve as the Chief Medical Officer (CMO) at the PFF overseeing medical affairs to help facilitate and drive key initiatives. In that time, the Foundation has worked with the pulmonary fibrosis medical community to establish the PFF Care Center Network (CCN), where people living with PF can find experienced medical professionals who understand their disease and support services to improve the quality of their lives. Simultaneously, we launched the PFF Patient Registry and were thrilled to announce in March that we began enrolling patients. The PFF Patient Registry collects and stores clinical data, biological samples and high-resolution CT scans of patients with all types of PF. This combination of data from so many patients, including those with less-studied forms of PF, will have an enormous impact on future research.

What are your thoughts on the current state of idiopathic pulmonary fibrosis research?

 I’m very encouraged about the way we’re moving forward to assist patients, and the collaborative research that’s being developed. The momentum we’re achieving with two approved therapies for idiopathic pulmonary fibrosis (IPF) has further stimulated the field, motivated researchers, physicians and patients alike. The Pulmonary Fibrosis Foundation’s PFF Care Center Network and the PFF Patient Registry enhances access for patients who wish to participate in research and ensures that they are able to do so in a safe, secure environment. The PFF has developed a network of 40 CCN sites across the country. We hope that closer and more accessible care and an engaged and collaborative medical community will ultimately result in more quickly delivered, expert and comprehensive treatment for patients with PF.

 The PFF recently launched a national registry for pulmonary fibrosis patients — what does this mean for future research?

The PFF Patient Registry is an important, comprehensive research tool available to help us in our fight against PF. The Registry is a database of de-identified (made anonymous) medical information, collected at participating CCN sites and gathered from at least 2,000 people living with PF. Together, the CCN and Registry will become an unparalleled resource for future research focused on developing treatments for PF.

 Can you tell us more about the PFF Care Center Network and how it might benefit members of PatientsLikeMe’s IPF community?

The PFF Care Center Network (CCN) is a consortium of academic medical centers and community-based clinics with expertise in caring for patients with PF and a commitment to improving the lives of those with the disease by providing the highest quality care. In addition, CCN sites offer numerous support and educational opportunities for patients and their families including resources and medical expertise for local support groups, PFF educational materials and an annual educational event.

September is Global Pulmonary Fibrosis Awareness Month and we encourage the members of the PatientsLikeMe IPF community to spread the message to family, friends, healthcare professionals, colleagues, neighbors, community leaders and others. To learn more and get involved, visit our website and download our online toolbox.

The opportunity to serve as CMO really is a unique chance to make a valuable contribution to this field and improve the lives of many individuals. I am hopeful that the PF research community will be successful in identifying treatment(s), and eventually a cure.

From your perspective, what is the PatientsLikeMe / PFF partnership all about?

Through this partnership, the PFF is able to offer the unique tools that PatientsLikeMe provides through its website to the PF community. The Foundation is looking forward to providing even greater patient engagement and improved outcomes thanks to this collaboration.

 


The community speaks out for Pulmonary Fibrosis Awareness Month

Posted September 1st, 2016 by

How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up.

In a recent forum thread, members chimed in with the one thing they think people should know about what it’s like to live with PF. Here’s a snapshot of what they had to say:

 

“…how hard it is to deal with the fact that you can’t do things you used to do and that even things we typically take for granted like showering are very difficult as the condition worsens.”

— PatientsLikeMe member living with PF

 

“Don’t settle, we have options, find a doctor that specializes in interstitial lung diseases which pulmonary fibrosis is part of. Let them decide with your help as a patient what is best for YOU. We are always so quick to put a pill in our mouths and hope it works. With this disease that isn’t necessarily the answer. Live with IPF/PF and advocate for your health.”

— PatientsLikeMe member living with PF

 

“I have lived with pulmonary fibrosis since i was diagnosed 10 years ago but i am certain i had the symptoms many years earlier. Since my diagnosis, which the medics tell me is idiopathic, i have been on the roller coaster that many patients will be only too familiar with. Nobody knows the cause. Nobody knows how to treat it. And nobody knows a cure. And until there is a significant increase in research funding nobody ever will.”

— PatientsLikeMe member living with PF

 

You can see the rest of the responses and add your own experience here. And be sure to check out the Pulmonary Fibrosis Foundation’s awareness month toolkit to find out how to get involved on social media and beyond.

 

 

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