• Waldenström Macroglobulinemia
  • Melanoma
  • Bladder Cancer
  • Brain Cancer
  • Breast Cancer
  • Childhood Cancers
  • Gastric Cancer
  • Gynecologic Cancer
  • Head & Neck Cancer
  • Immunotherapy
  • Kidney Cancer
  • Leukemia
  • Liver Cancer
  • Lung Cancer
  • Lymphoma Cancer
  • Mesothelioma
  • MPN
  • MDS
  • Myeloma
  • Prostate Cancer
  • Rare Cancers
  • Sarcoma
  • Skin Cancer
  • Testicular Cancer
  • Thyroid Cancer

Advocacy and the Science of Cancer Research: The AACR Scientist-Survivor Program


The AACR Scientist-Survivor Program lets cancer advocates network with the scientists who are driving cancer research.

This year, I was among the advocates for patients with cancer who applied for and were selected to participate in the American Association for Cancer Research (AACR) Scientist↔Survivor Program (SSP). As part of the program, I attended the AACR 2016 Annual Meeting held April 16-20 in New Orleans.

The program consisted of an orientation day, including an excellent “Cancer 101” briefing by Dr. Carolyn Compton; SSP-only sessions in which advocates met with top researchers to discuss specific topics such as immunotherapy and FDA policies; presentation of an original poster during an AACR poster session; a group project in which a scientific advisor and an experienced SSP mentor helped us explore a major aspect of cancer research; evening networking events; and, of course, attending the Annual Meeting with cancer researchers.

Posters created by advocates talked about a variety of subjects, including cancer journeys, advocacy organization outreach and even personal research projects. My poster discussed the benefits of the Lung Cancer Social Media (#LCSM) community on Twitter. Thank you to my fellow #LCSM Chat Core Members for their valuable suggestions and feedback!

I didn't understand every presentation in the actual AACR meeting -- in at least one presentation I didn't understand ANYTHING (gene editing is very technical) -- but I did come away with a better understanding of the scope of cancer research, some of the issues impeding progress and a list of topics I wanted to explore further. I loved listening to researchers explain cutting-edge work that might lead to better cancer treatments.

Some of the fascinating sessions I attended discussed:

  • Understanding how a cell's microenvironment might promote or inhibit cancer tumors and responses to therapies
  • Insights into cancer cell metabolism and evolution
  • Methods for detecting driving mutations in cancer cells
  • Using epigenetics to block cancer-causing pathways in cells
  • Engineering the immune system to personalize treatment
  • The "value in cancer care" debate from the patient, researcher and regulatory perspectives.

Of course it was impossible to see everything. Some of the fascinating posters and sessions that I missed touched on using viruses to prime immune responses, improving effectiveness of therapies through combination such as immunotherapy and radiation, inhibiting DNA repair in cancer cells and using big data to inform cancer trials.

Aspects of the SSP experience that stood out for me:

  • Meeting and networking with patients, survivors and advocates across a wide-range of cancer types
  • Being greeted, by name, in the hallway by a researcher who thanked me for my live tweets during the opening plenary session
  • Sitting in the front row as Vice President Joe Biden talked about the Cancer Moonshot
  • Attending a plenary session about cancer evolution and targeted therapies with my friend and fellow lung cancer advocate Linnea Olson, and seeing a scan of her lungs appear on the big screen
  • Having Dr. Jean Cui (a lead chemist on the Pfizer team that developed my current oral cancer therapy, Xalkori (crizotinib)) personally explain her poster about the newest drug she developed to treat my ROS1-rearranged cancer (as well as ALK- and NTRK1-rearranged cancer)

I highly recommend any cancer patient advocate who is interested in research to apply for the program! Thank you to the Bonnie J. Addario Lung Cancer Foundation for supporting my application to the AACR Scientist-Survivor Program.

You can view my poster "Online Collaboration & Support in the Lung Cancer Social Media (#LCSM) Community" here.

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