Posted on November 30, 2017 |
Cara tells us about the Foundation’s COPD Patient-Powered Research Network, the importance of advancing this initiative and how she first learned about COPD and its many causes.
Research is essential for improving treatments for COPD as well as finding a cure for this devastating disease. The COPD Foundation’s (COPDF) COPD Patient-Powered Research Network (COPD PPRN) aims to establish the largest network of individuals with COPD who are willing to share their health information and the impact this disease has on their lives. This, in turn, will lead to a deeper understanding of the disease and ultimately a cure.
As the Director of the COPD PPRN, Cara’s role is to “advance and expand the COPD PPRN by engaging patients in research, facilitating collaborations with stakeholders and building our research network.”
As Cara explains, “In my capacity I work towards the research aspect of the COPDF’s mission. We want to build the largest COPD patient-focused registry in the US (~75,000 people) where participants voluntarily share their health information, the impact COPD has on their lives as well as participate in research. This will enable us to do more research, discover more treatments and ultimately find a cure.”
Most recently, the COPD PPRN offered participants in the COPD community the opportunity to take part in three different studies. “We hope to have more opportunities in the future,” says Cara. To learn more about the COPD PPRN, click here.
While a huge misconception is that COPD is “just a smoker’s disease”, Cara knows first-hand that “there is a huge environmental component as well as a genetic one that needs to be researched more and understood.”
Indeed, Cara first learned about COPD when she was working overseas in Kenya. “People in villages were in dire need of clean cooking stoves. The ventilation was so bad. Women and children were exposed to cooking fumes that caused respiratory issues including COPD.”
Cara says she was “really struck by the environmental causes of this disease which go beyond just smoking cigarettes in one’s life. Environmental factors really play a huge role.”
She’s proud to be part of COPDF because it’s “really focused on the individual with COPD and those in the community who are affected. We are working to bring awareness to this disease that affects so many yet does not receive enough public attention or research dollars.”
She wants everyone to know that COPDF is “working for you and continually trying to find ways to advocate and make sure people in power understand how important it is to address COPD and help those affected.”
If you or someone you love has been affected by COPD, Cara says, “Don’t give up hope. Try to move a little every day. Even the smallest movement and exercise can help improve quality of life over the long run.”
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