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Brain Tumor Support Conversations - National Brain Tumor Society

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 9

Looking for more?
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

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…

braintumor.org

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 9

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 9

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.

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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?

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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.

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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!

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Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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

Brain Tumor Social Media Chat @btsmchat.bsky.social · Jun 8

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