Not only did I find an amazing community in #BTSM (brain tumor social media), I was welcomed with open arms and remain energized even though our scheduled chats are done. Lets still use the hashtag to connect and share updates. Thank you to all who built our community.
Today is Brain Cancer Awareness Day. Every day, 9 Canadians are told they have brain cancer. We need dedicated research to give doctors better tools to save lives. I stand with Brain Cancer Canada to drive research, to give more time, hope, & one day, the promise of a cure.
...I'm both inspired by and profoundly thankful for the dedication, exceptional care, and guidance from Dr. M. D. Cusimano, @gliomadoc.bsky.social, and teams at St. Michael's / @unityhealthto.bsky.social and @sunnybrookhsc.bsky.social who ensured I'm here to share this story. Thank you!!! #BTSM
I was recently interviewed by Angelica Bottaro at Healthing.ca, who created this piece which shares my #braincancer story more widely. I'm mindful that this is published on #WorldBrainDay2025 , and glad to have had the chance to share with others! #BTSM
www.healthing.ca/brain-cancer...
Thanks, @theabta.bsky.social and the incomparable @thelizarmy.bsky.social for today's engaging webinar on participating in research and the clear message that we can all participate! Liz, I love your reminder that we all have the capacity to be curious and become researchers as we explore! #BTSM
I'll catch up on tonight's chat a little later, when I'm back at my computer and better able to take in the conversations, so don't be surprised if I chime in with a reply or more thoughts tomorrow or later in the week! #btsm
A4. I'm energized by people I meet along the way. Living with #braincancer is a really tough way to meet the most amazing people, but it's worth it! I'm only about a year into my proper advocacy path but I keep learning and growing along the way; my advice is to keep at it and grow as we go #BTSM
A3. We don't have a direct Canadian equivalent of @braintumor.org 's Head To The Hill but I think it's a great approach! There's much we can learn from different organizations where we grow ideas to fit our local needs while collaborating and sharing internationally. #BTSM
A2 I see a gap in fundamental #braintumor and #braincancer research funding, where early research can find game-changing discoveries that will better tomorrow's outcomes. By advocating for funding, both public / government, and private, we can make a lasting impact for the future! #BTSM
A1 ctd. As I become more active in volunteering and learn more about Health Economics and Health Equity topics, I'm driven to keep doing and learning more. When we work together, we can make much-needed progress! We build hope when we come together as a community! #BTSM
A1. I volunteer with Brain Cancer Canada (www.braincancercanada.ca) on the Scientific Advisory Cttee as we fuel research through grant funding, and I participate wherever I can with Canada's Drug Agency ( @cda-amc.bsky.social ) to stay connected with health care delivery in Canada. #BTSM
Hi, everyone! I'm Stuart, also joining by the orange bubble in the @btsmchat.bsky.social account, and introduced there. I'm here to join in the conversation, though I've scheduled my posts with @buffer.com while away from my computer, so I might not reply to any other comments for a while! #BTSM
Ethan Embry, as Mark, in Empire Records.
I hope everyone is having a good Rex Manning Day today 😃🎸
Happy RMD @ethanembry.bsky.social !
#RexManningDay
On April 2nd I spoke at an art auction hosted by McMaster University's Students Advancing Brain Cancer Research; I describe it and the importance of funding #braincancer research in a TikTok at vm.tiktok.com/ZMBCCXdce/ #btsm
Thank you, for hosting this first chat over here. This was a useful and valuable topic, I've already added some good finds to my list for future reading and consideration. Thanks for the #btsm #skychat!
That's a great insight - while I've seen AI sneak into other areas of my life, I hadn't thought of how it might impact trustworthiness of information I'll see in the future, it's another thing to consider and cross-check when we find future new resources! #btsm
A4. Maintaining open access to updated information might be a challenge but I don't think it will be insurmountable. An easy thing we can all do is to share when we see new information or resources that can benefit our community. #BTSM
I'm happy to have my posts cross-posted / shared without restriction, and I'll plan to join for the chat on X also :-) #BTSM
A3 (4) The book Zero to Birth by W. A. Harris taught me much about how our brains develop and left me fascinated, while helping me better appreciate how brain tumors interfere with this organ where we form our whole existence. #BTSM
A3 (3) I'm biased as a volunteer and Ambassador with Brain Cancer Canada but our newly updated site at braincancercanada.ca has great information, stories, and links to many Canadian resources for those with malignant brain tumours ( #braincancer ). #BTSM
These are another two books I've not come across yet, but will add to my list! Thank you for sharing - I already feel drawn to Living Low Grade by the title alone, thank you! #btsm
I've not come across these books yet, so I'm going to add them to my growing reading list, thanks for sharing them! #btsm
A3 (2) For a non-clinical read, Sophie Kinsella's fictional autobiography "What Does It Feel Like" felt relatable, it gave me hope about my experiences being able to be understood by others, when I didn't want a science lesson. #BTSM
A3 (1) For early understanding of the anatomy of the brain, I found the Johns Hopkins Medicine page at https://www.hopkinsmedicine.org/health/conditions-and-diseases/anatomy-of-the-brain to help as I learned about what my new diagnosis was going to impact. #BTSM
A2.c) NIH has a helpful guide on how to evaluate trustworthiness: https://www.nih.gov/about-nih/what-we-do/science-health-public-trust/perspectives/how-evaluate-trustworthiness-science #BTSM
A2.a) PubMed (https://pubmed.ncbi.nlm.nih.gov/) and resources shared by experts I follow. @neuroonc.bsky.social and their podcast are great for science & clinical practice.
b) Current peer-reviewed evidence tops my list.
c) Checking references and disclosures, review numbers and statistics. #BTSM
A1 for clinicians - I'm not a clinician myself, but as a patients, I've mostly received pointers to regional support groups and charitable organizations from my clinicians... It's been less about current science until I get talking with receptive care partners... #btsm
A1. I'm interested in new research, looking to future hope, AND to best understand pros/cons of today's options and standard of care so I can make informed decisions for care both today and in the future #BTSM
I'm Stuart, from Toronto, Canada, living with Grade 2 Oligodendroglioma since 2022, on Vora (post-surgery but no chemotherapy or radiation therapy, yet), here for the community! #BTSM
I'll be there 🥳
