Brain Tumor Social Media Chat

The Friends We Made Along the Way: Sunsetting Brain Tumor Social Media (#BTSM) Online Chats December 7, 2025 Dear Members of the #BTSM Community, It is with both gratitude and reflection that today we announce the decision to sunset the regular Brain Tumor Social Media (#BTSM) online chats. The #BTSM community was founded in May 2012 to foster support, provide education, and advocate for the brain tumor community, and has served as a vital online gathering place for patients, care partners, clinicians, researchers, and advocacy organizations. Through monthly live Twitter chats (and later other online formats), participants could share experiences, ask questions, and discuss topics related to diagnosis, treatment, research, quality of life, survivorship, and end of life. #BTSM has always been a grassroots initiative—created, moderated, and sustained by patients and care partners committed to connection and advocacy. Rationale for Sunsetting #BTSM Chat This decision was made after careful consideration of several key factors, and #BTSM advance care planning: • The social media landscape has changed significantly since #BTSM began, and patterns of engagement have evolved accordingly. • Many of our dedicated moderators and organizers are transitioning into new professional and personal roles, making it increasingly difficult to sustain the regular chat schedule. • The needs of the brain tumor community continue to evolve, and the traditional live-chat format no longer fully reflects the ways individuals connect and share information online. After much discussion, the organizer team determined that this is an appropriate moment to close this chapter of scheduled #BTSM chats, while honoring the extraordinary legacy of community and advocacy they represent. Gratitude to the #BTSM Community We extend our deepest appreciation to every person who participated in #BTSM chats over the years. Whether you shared your story, offered support, asked a question, or simply followe…

Recognition of #BTSM Moderators The power of #BTSM has always come from its people—the patients, care partners, clinicians, researchers, advocates, and friends—those whose dedication to tuning in, whose curiosity to learn, willingness to help, kindness to strangers, and belief in a movement have defined this effort. The real #BTSM are the friends made along the way. But the success and longevity of #BTSM would not have been possible without the extraordinary efforts of its organizers and moderators. Their dedication, time, and commitment - often undertaken quietly and without recognition - sustained the community, provided steady guidance throughout its evolution, and has been instrumental in fostering a safe, inclusive, and supportive environment for all participants. We gratefully acknowledge the following individuals for their years of service (from - to) and leadership: • Charlie Blotner, co-founder (2012 - 2020) • Liz Salmi, co-founder (2012 - 2021) • Adam Hayden (2017 - 2021) • Jeremy Pivor (2018 - 2021) • Sabine Schwab (2018 - present) • Lisa O’Leary (2018 - 2024) • Ashley Love Sumrall (2020 - 2022) • Emily McIntosh (2021- present) • Shawn Carey (2022 - present) • Guy Lipof (2023 - 2024) • Stuart Selby (2024 - present) Looking Ahead: A Future #BTSM? While the regularly scheduled chats have concluded, the #BTSM hashtag remains active as a continuing means for connection, resource sharing, and community engagement within the broader brain tumor social media ecosystem. We encourage ongoing use of the hashtag to amplify awareness, share knowledge, promote collaboration, and sustain the relationships #BTSM inspired. Though this marks the end of one era, it also represents an evolution—an opportunity for new forms of connection, advocacy, and dialogue to emerge. We offer our heartfelt thanks to every individual who has contributed to the success of #BTSM since its inception. Together, we have created a legacy of patient empowerment, advocacy, and community. No…

We are incredibly grateful for the community we have created - it's time to say goodbye to our regularly scheduled chats. With ❤️, the #BTSM chats co-founder & organizer team @thelizarmy.bsky.social @sabine-nj.bsky.social @mcintose.bsky.social @shawncarey42.bsky.social @stuartselby.bsky.social

#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…

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

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.