Albuquerque Part 1: Everything is Activism (even cancer patient advocacy)

This is the first part of a short series on being heard in this world. While my focus is mostly cancer-oriented, my hope is that others will be motivated to speak on whatever is important to them.

One of the things that I enjoy about Substack is the opportunity to meet interesting people and have a deeper conversation on a wide array of topics than the few sentences that a traditional blog or social media allows. For instance, I’ve guest-posted/collaborated on a few “stacks” with

Andrew Smith

, gotten to know the quirky tech sensibility of

Daniel Nest

, gotten help processing my more intense emotions from

Raechel Anne Jolie

, and most recently made an international connection with

Edem Gold 🇳🇬

who is working on a potentially transformative project that crosses many areas of my own interest- using technology to develop better low-cost diagnostic tools for those dealing with cancer in an underserved and underfunded nation. I’ll get more into Edem’s work and why it excites me so much in the near future, but for now, I’ll just say how big he’s dreaming big while also remaining very practical and targeting seemingly simple things first.

I have no idea what his musical tastes are (yet) but his work feels very punk rock in attitude to me. Or maybe like a young and updated version of his countryman Fela Kuti- but instead of music and activism, he’s merging tech and better healthcare for all.

But the reason I’m discussing Edem so much is that the timing of my connection with him was quite fortuitous. You see, I was fortunate enough to be in Albuquerque, New Mexico this past week for the annual meeting of the PE-CGS network. PE-CGS stands for a very long and awkward sciencey name but all you really need to know is that it’s part of The Cancer Moonshot program. It’s a collection of research groups working on a host of issues related to cancer. I won’t go any deeper as it gets incredibly nerdy… and fast. Fortunately for me, incredibly nerdy is my wheelhouse.

I came to be involved with the PE-CGS after getting an invitation of sorts from The Notorious L.I.Z. Salmi to apply to be a patient member of the Research Advisory Committee (RAC) for a smaller sub-study called OPTIMUM. If you haven’t heard of her, just know that one does not take an invitation from her lightly. She’s been at this advocacy/activism game as an actual patient living with brain cancer for as long as anyone out there and is pretty dang good at merging the worlds of science and… uh… the rest of us. It’s a deep honor to even be considered by someone with her street cred. So naturally, I took heed and threw my hat in for consideration.

And after a brief vetting process, I was in.

The vast bulk of the work revolves around The Low Grade Glioma Registry which is an international study that is working to improve research around brain tumors. If you have a grade II or III (I know some grade III folks will wonder about that descriptor, but just go with it), I recommend clicking this link and checking it out. Even better, sign up!

Anyway, that was about 18 months ago and it has directly led to me being involved in some other really cool and personally fulfilling things that are not only impressive to my mother, but also are legit helping other brain tumor patients out there. And if you want to know the difference between brain cancers and brain tumors— that’s coming soon too.

But wait… Albuquerque.

It was a three-day event with loads of speakers and breakout discussion groups focusing on various cancer genomic issues. I was there, with several other patient advocates/activists to represent the patient perspective reminding researchers, scientists, and “donctors” how we think, act, and feel. I even got to swear! I was asked to be a last-minute replacement on a panel where I let loose some f-bombs and other rage towards the gaps between patients and the medical community. I worried that I offend the more professional folks in attendance but instead received a ton of positive feedback from many there, including a big muckity-muck from the National Cancer Institute (NCI) for my bluntness and quote “real talk”. Those who have read this Substack before know what I’m talking about.

I’d like to say, that I was the best part of the entire thing, but not really. My favorite part was the diversity of topics discussed. It was reassuring to know that so many leading the way in research are, in fact, thinking about many issues that go way beyond the life-or-death components of cancer. Things like health inequities, cultural drivers of patient engagement, AI, and much more. And that so many people living with cancer were there (around 15-20% of the attendees), reminded me that I’m not alone in my thoughts or what I’m going through. No, I’m not completely off-base in my views on “cancer life”. And folks like Liz Salmi and

Glioblastology

‘s Adam Hayden have brought us to this moment where patients and medical folks are working together— not talking shit about each other behind each other’s back.

We may not be waving protest signs and spewing hateful things towards the other side, but we are making change in a very constructive way— by working together and realizing there are many issues that a far more complex than a pithy feel-good statement and definitely not always comfortable.

That’s why I feel advocacy=activism. It may not look like what many would expect, but we got here on the backs of those before us and the many still with us. The Liz Army is indeed growing (check her socials to understand the reference) slowly, but surely.

me and the OPTIMUM crew which is a mix of medical research folks and patients

And if you aren’t sure how any of this connects to any thing you may be passionate about in your life or even my discussions with

Edem Gold 🇳🇬

, recall from previous stacks when I called myself an intersectionalist of sorts. I believe all struggles are connected in some way. When we do good for one, we are doing good for all. No serious issue in this world boils down to simple solutions, but instead require working together through uncomfortable conversation. I kept bringing up Edem with various experts in order to help him navigate the world of funding for a project I will soon discuss here and hopefully with him. Lots of “important and smart” people expressed enthusiasm for the concept and gave me some helpful advice to pass Edem’s way. He’ll eventually do the heavy lifting, but it is gratifying to know that I was a small part of something that could potentially be so helpful to so many. And even if his work never becomes a full reality, he fucking tried. He put himself out there with the bold idea that any of us, with the right training, can be a part of the solution— not part of the problem.

For more info on what Edem is up against, click this link.

Not that anything I’m doing is leading to radical change overnight, but it’s something. I’m a small cog on a big wheel, but I’m on the wheel. I didn’t get there with anything big. I just kept raising my hand and letting people know that I cared about certain issues. Eventually, various organizations called upon me to do it more formally. The same could easily be true for anyone reading this regarding any issue— whether it be climate change, societal inequities, etc. Just raise your hand and be heard. Then repeat. Hell, I’m no fan of them, but there are several members of the US Congress right now who did little more than continually make themselves heard so who knows what you could do. Fortunately, most things in life require some training and deeper understanding to make any actual change.

me, raging against America Airlines’ wheelchair service, which is among the worst in that industry (more on that disability rights issue also coming soon)

As for me, I’m still in the early stages of whatever it is that I’m doing so forgive me a few swear words from time to time. You don’t need to be perfect either. You just need to try.