Brain Tumor Social Media Chat

#BTSM Starter Pack Join the conversation

If you’d like to be added to our Bluesky starter pack, at bsky.app/starter-pack..., please let us know. #BTSM

Brain Tumor Support Conversations - National Brain Tumor Society The Brain Tumor Support Conversations are an online support group run by the brain tumor community for the brain tumor community. This group is attended and run by patients and care partners who have…

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Join Brain Tumor Support Conversations⁠—a virtual support group w @lisaoleary524.bsky.social, @adammarc.bsky.social, and @Shawncarey42.bsky.social on Sun, July 20th, 2025. Patients, care partners, any brain tumor type/stage of treatment can join! Register: buff.ly/kzWSZEx #BTSM

Tonight’s #BTSM chat topics were created by @sabine-nj.bsky.social‬ and @stuartselby.bsky.social. They were reviewed by @mcintose.bsky.social and @shawncarey42.bsky.social

We’re glad you could join us for our #BTSM #skychat. If you could not make it: it’s never too late to engage with our community by using the #BTSM hashtag and tagging us throughout the month.

Repeating Q4: #BTSM
In a world that constantly changes: what keeps you motivated to stay engaged in advocacy, even when progress oftentimes feels slow? What advice would you give to others just starting on this advocacy journey?

Q4: #BTSM
In a world that constantly changes: what keeps you motivated to stay engaged in advocacy, even when progress oftentimes feels slow? What advice would you give to others just starting on this advocacy journey?

Almost time for our final question. Let’s get ready for Q4 in about 2 minutes! #BTSM

This is a great point, @sabine-nj.bsky.social! There is a power in sharing our stories and experiences. Each one has a way of bringing us together and driving forward treatment options. #btsm

Repeating Q3: #BTSM
What ideas or approaches do you think could help address these gaps, and how can we, as a community, work together to drive change? What partnerships with other organizations do you suggest for a stronger and more effective impact?

Great point, @stuartselby.bsky.social! The public and proviate partnerships are making a big impact on making sure #braintumor and #braincancer patients have the treatment options they deserve. #btsm

Q3: #BTSM
What ideas or approaches do you think could help address these gaps, and how can we, as a community, work together to drive change? What partnerships with other organizations do you suggest for a stronger and more effective impact?

If you are here tonight to just listen, please post “#BTSM” so we know you’re in the audience. 👋

Repeating Q2: #BTSM
In what area(s) do you see the greatest need for advocacy in the #braintumor community today? In what area do you believe we can make the most meaningful impact?

Q2: #BTSM
In what area(s) do you see the greatest need for advocacy in the #braintumor community today? In what area do you believe we can make the most meaningful impact?

Repeating Q1: #BTSM
What type(s) of patient advocacy have you personally been involved with, and how has your focus evolved over time? Please share with our community what inspires and drives your interest in this space. For non advocates: how have you personally been helped by someone’s advocacy?

We are grateful for all your work in this space, @sabine-nj.bsky.social. You have been an incredible force for change for patients! #btsm

Hi, Sabine! Glad you can be here with us tonight in any way you can. Hope you are enjoying dinner! #btsm

Q1: #BTSM
What type(s) of patient advocacy have you personally been involved with, and how has your focus evolved over time? Please share with our community what inspires and drives your interest in this space. For non advocates: how have you personally been helped by someone’s advocacy efforts?

Watch this orange #BTSM bubble for today’s questions, labeled Q1, Q2, Q3 and Q4. Label your answers with A1, A2, A3 and A4 to make conversation easier to follow! Coming up soon: our first question, wait a moment for Q1.

Let’s start with introductions!

🔸What’s your name?
🔸Where are you based?
🔸Who are you?
🔸Why are you here?
Please indicate what phase of your brain tumor journey you are currently in (eg. newly diagnosed, watch & wait, clinical trial, etc.)

Post “#BTSM” if you’re only here to listen. Welcome all!

Note: We assume all opinions expressed here are your own personal opinions and not those of an employer (unless specified).

Dissenting/opposing views are perfectly acceptable. Personal attacks, vulgar language and negative posts directed at an individual are not tolerated. #BTSM

Tonight’s #BTSM theme is:
Brain Tumor Advocacy. Where passion meets progress.

Shawn is a patient advocate and former caregiver to his late mom. He is passionate about driving change, supporting one another, and making sure to speak up for the community. #BTSM

Stuart is in his third year of living with Oligodendroglioma, in Toronto, Canada. He is an engagement ambassador with Brain Cancer Canada #BTSM.

Running this orange #BTSM chat bubble tonight are @stuartselby.bsky.social and @shawncarey42.bsky.social

ALL points of view are welcome here: patients, care partners, clinicians, researchers, advocates.
#BTSM

🔸 We are a patient-run community, and are not owned by any organization.
🔸 We are a common ground where patients, care partners, clinicians, researchers, & advocates connect to learn, grow, and spur action.
🔸We discuss topics meaningful to people facing & caring for those with a #braintumor. #BTSM

Hello and welcome to our second Brain Tumor Social Media (#BTSM) live chat on Bluesky! 👋 We’re glad you’re here with us!

T-10 minutes until our #BTSM #skychat. We’re getting things set up. Join us and send a skeet when you can over the next hour.

T-1 hour until our #BTSM #braintumor Advocacy #skychat! We’re getting excited, are you?