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Research Scientists Working with Patient Advocates

When I first arrived at Georgetown, I was able to share my work with the Georgetown Breast Cancer Advocates (GBCA). At the end of my presentation, one of the advocates asked what were the side effects of the repurposed drug I was working on. I described they were similar to Tamoxifen and she said that for some patients, Tamoxifen is like popping a tictac and for others the side effects are debilitating. I was immediately drawn to considering the patient perspective. This recent write up describes GBCA's current and future directions. 

Some of the advocates from GBCA introduced me to breast cancer social media (#BCSM), a community of patient advocates, caregivers, oncologists, and scientists who have discussions every Monday night at 9:00 pm EST via twitter about all of the challenges surrounding a breast cancer diagnosis. This group has not only directly impacted my research and the goals I have for my future, but also has helped me on a personal level following my best friend's breast cancer diagnosis at 28 years old. For more information, visit their website and follow along using the hastag #BCSM!

To help others build relationships between research scientists and patients/patient advocates, I applied to become an Elevate Ambassador. NCCS's mission is to advocate for quality cancer care for all people touched by cancer.  They are a wonderful resources for survivors (defined as someone who has ever been diagnosed with cancer from the time of diagnosis) and caregivers. Elevate Ambassadors will develop an idea for a project to improve survivorship care in their community, whether at a hospital, oncology practice, community-based organization, or virtual community. I am honored to have been selected as an Elevate Ambassador to improve relationships between my community (basic research scientists) and patient advocates! For more information, visit the websites for the Elevate Program and NCCS.

The Cancer Trainee Advocate Program (CTAP)

CTAP is in the process of being developed! The website will be available here and you can follow along on twitter here.
I have written about working with patient advocates for AACR and CTAP for NCCS. Please feel free to reach out with questions!
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