I had the wonderful privilege of attending the American Association for Cancer Research (AACR) 2019 Annual Meeting from March 31st – April 2rd 2019 in Atlanta, Ga. The Annual Meeting provides the best cancer science and medicine from institutions all over the world including over 21,000 laboratory researchers, clinicians, patient advocates, and other oncology professionals. They presented cutting-edge science and included the perspective of patient advocates.
I was honored to be chosen as one of the participants for their Scientist <-> Survivor Program (SSP). The SSP is the brainstorm of Dr. Anna Barker Co-Director, Complex Adaptive Systems, Arizona State University, who acknowledges the critical role the patient plays in the research process and developed the SSP to bridge the gap between researcher and advocate. Survivors are the “Blockbluster Drug” and critical to prioritizing questions, designs and planning, marketing and networks, dissemination post study, developing new health technology and more.
As a participant in the AACR SSP we were immersed on a Survivor Track with a wealth of educational lectures, workshops, mentoring meetings, and the opportunity to share our work as advocates with the research community. We were assigned to small groups with a task to dive deep into one question and create a presentation to be given at our closing ceremony.
The days were long, however well worth the 15,000 steps I took each day spanning the convention center to learn a wealth of information and far beyond my focus of breast cancer. There are too many topics and tidbits to share in just one blog, so I will share with you my favorite take-aways.
Dr. Caroline Compton was my favorite speaker from Arizona State University. Her energy and speaking style is mesmerizing and she gave Cancer 101. She spoke my language and confirmed at least 80% of all cancer could be prevented if we abided by 8 simple rules, a large portion lifestyle choices such as exercise, limited alcohol and tobacco. We are looking for an opportunity to hire her for a speaking engagement and share her knowledge with our breast cancer community and beyond!
Dr. Laura Esserman challenged my beliefs that women should receive mammograms at age 40. She stated that 70% of all women find breast cancer through a palpable mass. This is the same data we collect through our wig clients battling breast cancer. According to Dr. Esserman the remaining 30% have no change in mortality rate whatsoever by having mammograms at age 40 and we are only exposing them to additional radiation increasing their risk of breast cancer. I am eager to attend the National Breast Cancer Coalition Project Lead program in July and dive deeper into this question and the science behind it. We will keep you updated!
Connecting one on one with our assigned mentor, scientist Keith Chan within our Scientist <->
Survivor program. It was fascinating to view cancer from the eyes of the scientist and likewise share my lens as a survivor. In addition, I loved networking with fellow advocates/survivors and learning about their dedication across the United States and Canada to make a difference.
Learning about the complexities involved in research, the magnitude of work and finances involved to develop a successful drug, the struggles of getting clinical trials to the patients and where the advocate role comes into play.
It was disheartening to learn that pediatric cancer research is neglected due to lack of profit. Nancy Goodman is changing that! Goodman founded Kids v Cancer in 2009 in response to the death of her 10-year-old son, Jacob, from medulloblastoma, a pediatric brain cancer. She was presented with the AACR Distinguished Public Service Award in recognition of her outstanding leadership in cancer policy and advocacy. Just one of her many accomplishments, she was a champion for the Creating Hope Act Rare Pediatric Priority Review Voucher Program, which provided significant incentives for pediatric rare disease drug development.
I’m honored to have been a part of the American Association for Cancer Research and their Scientist <-> Survivor program. It was an incredible experience for me and introduced me to the research world. Due to my experience at the AACR SSP I now have a desire to continue my education in the cancer world in order to share with our entire community and beyond! Thank you AACR, Dr. Barker, Karen, and all involved to make this experience outstanding!
Live and Give,
Holly Rose
