Consumer Involvement
Ms. Dusty Joy Donaldson, Dusty Joy Foundation (LiveLung)
Lung cancer has turned my world upside down. I am one of the so-called lucky ones, because I am a long-term survivor. Unfortunately, most folks diagnosed with lung cancer die within a year of their diagnosis. I have survived 13 years. The fact that I am alive and well gives me a sense of urgency and responsibility for others facing this disease. I have been advocating for lung cancer patients since my diagnosis and will continue to do so as long as I am able. Lung cancer advocacy has become my calling in life.
Currently, I am the co-chair of the Lung Cancer Action Network (LungCAN), an association of all non-profits based in the United States that focuses on lung cancer. In addition to working with LungCAN, I founded the Dusty Joy Foundation (LiveLung) in 2010, which works with nurses at about 15 cancer centers to provide gift bags to newly-diagnosed lung cancer patients and conducts monthly lung cancer support groups in four cities. I love being able to work with all the other non-profits and the wonderful people at each organization!
I learned about the Department of Defense Lung Cancer Research Program (LCRP) from my fellow lung cancer advocate Katie Brown from the LUNGevity Foundation, who nominated me as a reviewer. Serving as a consumer reviewer for the LCRP is both challenging and rewarding. Challenging, because my background before my diagnosis lacked scientific knowledge. In fact, I do not like to admit this, but the truth is that I have always struggled with science. I earned As and Bs throughout college - except for the science courses. I had to take biology twice! If I can do this, I believe anyone can. It is also exciting to review some of the research proposals that hold so much hope and promise for future treatments. It is rewarding to speak up with the patient's voice and perspective. Being a consumer reviewer has also helped me keep current on scientific advances in lung cancer research, which is a very important part of being an effective lung cancer advocate.
The LCRP is extremely important to the lung cancer field and community. Lung cancer is the number one cancer killer and only receives a fraction of research funding compared to other major cancers. As an advocate, I join others in asking support for this extremely important program.
Last updated Friday, December 13, 2024