Faces of COPD: Vinny Malanga says, 'Get involved in the community.'
Posted on November 30, 2017 |
Vinny tells us about his role at the Foundation, how he learned about COPD and the critical role technology plays in connecting the COPD community, raising awareness, improving education and furthering research. Read on to learn more.
As the Chief Information Officer at the COPD Foundation (COPDF), Vinny is responsible for “all of the Foundation’s technology including the infrastructure that powers our websites, COPD360social and BronchandNTM360social, our search engine optimization strategy and research capabilities.”
Vinny’s worked as a software engineer and data architect since 1996. He “began a successful consulting firm, which gave me the opportunity to develop technology solutions for many Fortune 100 companies in and around New York City. This resulted in me having a large technology ‘toolbox’ that I can apply to my work at COPDF.”
Vinny first learned about COPD after meeting John Walsh and his family through “my wife, Elisha, COPDF’s current Chief Research Officer. I had the privilege of knowing John for quite some time, having helped with technology challenges in the early days of COPDF. In 2013, John asked me to come on board in a more active role to help use technology to further COPDF’s mission.”
“Though John was my personal connection to this disease, in my years working with COPDF I’ve gained many new friends who live with COPD as well as those who provide support and healthcare to those affected. I’m always saddened to hear that people think that individuals who have COPD did this to themselves because they chose to smoke. This is a huge misconception and hopefully through our efforts we will correct this,” added Vinny.
John recognized the potential of technology to meet the many challenges that the COPD community faced. As Vinny explains, “John asked me to create a more powerful online presence and engaging website. He wanted the website to be more visible in search engines so more people in the COPD community could find and use it.”
Additionally, “John wanted to use technology to connect the COPD community to better foster collaboration, promote education and, most importantly, provide support that they may not be getting elsewhere. The ability to have those affected by COPD share experiences and offer support to each other in large numbers and in real time is something John wanted very much.”
“Though John’s vision will never be complete until a cure for COPD is found, we have had many successes as we strive for that goal. One such success is COPD360social. At the time of this posting we have just over 33,000 members. We have a great team at COPDF that serves as the core social strategy group and we are all very proud and humbled by its success.”
Since 2013, the visibility of the Foundation website “has grown exponentially, enabling more of those affected by COPD to access our resources, better educate themselves about the disease and communicate with others. Additionally, through the COPD Patient-Powered Research Network, our research capabilities have expanded greatly enabling COPDF to better develop and maintain large-scale longitudinal research studies and clinical trials as well as integrate with external systems and devices such as electronic medical records and continuous positive airway pressure machines.
The COPD Foundation offers many resources and tremendous support to all those affected by COPD—patients, caregivers, healthcare professionals, family members and friends. “Our goal is to improve the lives of all those affected by COPD and hopefully, one day, find a cure.”
But, as Vinny explains, “We at COPDF can’t do it alone. We need the COPD community to get involved in advocacy efforts, public policy, research, education efforts, support groups such as COPD360social and any activity that brings awareness to COPD.”
Asked to give one piece of advice to someone affected by COPD, Vinny says, “Use the resources we provide at COPDF, especially COPD360social. Get involved in the community and share your experiences, ask questions, answer others’ questions. Provide and receive support and encouragement to and from others in the community.”