As a 20 year brain tumor survivor, I have spent the better part of the last two decades supporting and educating those affected by brain tumors. Being accepted into the SSP program was an honor and such an amazing opportunity not only for me personally, but for the Gray Matters Foundation’s ongoing commitment to patient advocacy.
About The Scientist↔Survivor Program
The AACR Annual Meeting was held in Atlanta, Georgia at the Georgia World Congress Center, an absolutely massive and beautiful structure that is one of the largest convention centers in the US! At 1.5 million square feet of exhibit space no wonder my feet were so tired!!
It was 5 days jam-packed with presentations, workshops, meetups, panels and more featuring over 22,500 scientists, clinicians, advocates, and other attendees from around the world.
And I got to be a part of it! This was one of the largest events I have ever participated in! I will admit I was a little overwhelmed at first by the sheer number of people and things happening all around. But I quickly settled in thanks to the camaraderie of the other attendees and my amazing SSP Group members and mentors.
A Poster for your Thoughts
One of my favorite parts of the convention was the poster session. Each advocate was asked to share a poster outlining their role as an advocate in the cancer community. It was an opportunity for us to get to know other advocates outside of our group and also to network with others attending the convention.
I was moved by the outpouring of attendees that stopped by my section to ask questions and share stories. It was so much fun. My head is still spinning! It was truly an amazing event!
Check out our mini interview hosted by Emil Lou, MD, PhD, Assistant Professor, University of Minnesota. 👇
Knowledge is Power
I can’t begin to express the value that participating in the Scientist↔Survivor Program has brought to my organization. The information and tools that I learned have been used every day since my return home.
Prior to this convention, I had never looked much into cancer research other than as it pertains to staying ahead of my disease. Now I try to take a proactive approach – stay ahead and know what my options are.
So much of my role as a patient advocate is reactionary. Precision medicine does so much for breast cancer, lung cancer, and colon cancer, among others, as far as early detection and treatment options, but not so much for brain cancer as it is NOT a preventable cancer.
I am unable to raise awareness and encourage my community to get “preventive screenings” for brain tumors because no such thing exist. I step in AFTER the diagnosis has already been made. I build relationships with the patients and their families to help navigate them through this difficult time.
I think because of this, I didn’t have a strong grasp on the information surrounding cancer research as I was always so focused on supporting the patients and the “next steps” side of things.
But as I listened to the researchers & experts in their field talk about their findings in cancer medicine, even though it did not always apply directly to me and my cancer, it was valuable to see what others were doing.
Being able to have conversations with survivors and scientists of all different types of cancer was refreshing. We discussed topics that are common in our daily encounters with medical jargon and many letter abbreviations but are not often fully understood.
Having the opportunity to deep dive into these complex topics and gain an understanding of their role in fighting, treating or preventing cancer was invaluable. I was ready to bring that information back to my community and truly speak knowledgeably about it.
Giving Back Through Gray Matters
I came home with my brain overflowing! My biggest take-away from this experience was learning more about how research and advocacy can work together.
It’s funny because to me, all of this “scientific stuff” is the hard part. But what I learned from my conversations with the scientists and researchers is that communicating with the patients is what they consider the hard part.
Humans have a need for social interaction. It’s all about the relationships we have with each other. Oftentimes our interactions in medical settings can seem only about the statistics. Creating connections is exactly what The Gray Matters Foundation is all about and it’s what makes us different —
“We are about Support Not Statistics.”
With the knowledge I have gained from the AACR Annual Meeting I can be a go between for patients and professionals.
The Gray Matters Foundation is in a great position to do this because we already have a LOT of experience building patient relationships.
I want to use what I have learned to open the door for building stronger partnerships with researchers, doctors and the medical side of the community here in my home state of Arizona.
I have so many opportunities in which to share what I have learned and collaborate with the community through my brain buddie network, patients & family members, and the Brain Tumor Support Group at Ivy Brain Tumor Center.
I was personally asked to share what I learned with leadership at Ivy Brain Tumor Center and I also had the chance to share with visitors at the Barrow Neurological Institute’s Brain Tumor Survivor and Caregiver Symposium, which I attended shortly after my return.
I want to strive to bridge the gap between support and statistics. The better we can effectively communicate with each other as patients, supporters, doctors, researchers, scientists, medical staff, and family members — the better understanding we have of cancer from ALL angles. Together we can do what it takes to get closer to a win for all.