This one hurts deeply. Adam Hayden helped shape how I show up for this community. His wisdom, clarity of thought and advocacy style made so many of us braver voices, better listeners, and fearless advocates. The #btsm community will miss him terribly. 🩶

Can’t wait for this to launch tomorrow! #btsm Give it a listen, my friend Bri will be sharing her story in episode one, and her sister/care partner in part 2. open.spotify.com/episode/0RHU...

It's been an honor and a pleasure having been able to serve the #BTSM community here, on Twitter, and on X as organizer/moderator for so many years. Even though the chats are over, the conversation can continue. Please let's keep in touch via the #BTSM hashtag. 🩶

Honored to have had the opportunity to kick off the @the_abta.bsky.social National Conference this year. It was a huge success and great intro to the conference weekend. 💻 can’t make it to Chicago? Online participation is free! #btsm #abta2025nationalconference #braintumor

Will I see you there? #btsm Let’s connect here or through the conference app and let’s make sure we’ll find some time to meet up. Also, join the Campfire Connections networking session at 4pm on Friday. Hosted by yours truly. 🩶

Today is #GlioblastomaAwarenessDay.In 2021, the WHO updated CNS tumor classifications which led to me being a #glioblastoma patient.I am doing fairly well but many of my friends are not.Please consider making a donation to fuel research, it is much needed. give.abta.org/give/474321/... #btsm

PSA: There is a no cancer that is the “good” kind. Mind you there are levels to cancer. Some less aggressive, etc. There is however, no “good” kind. #Cansky

Surround yourself with people who speak up for you, lift you up, share their knowledge, and help you grow. #sabine365

This! Great article on #patientadvocacy by Christine van Raesfeld « Our expertise isn’t theoretical—it’s personal, hard-earned, and often traumatic. We’ve survived what others research. » open.substack.com/pub/christin... #btsm

Chronic allergic sinusitis / rhinitis anyone? How do you manage your symptoms?

The things we do on a Thursday night. Being a panelist for @Ourbrainbankforgbm.bsky.social (OBB), sharing my thoughts on patient power, hope, science, and politics . This event honored the late GBM superstar Jessica Morris, founder of OBB and author of “All in my head.” (a.co/d/8QnYrZg) #btsm

@ourbrainbankforgbm.bsky.social @preopticarea.bsky.social @roelverhaak.bsky.social‬ @sabine-nj.bsky.social @samiracle04.bsky.social @sarahfunes.bsky.social @scurrier.bsky.social @shawncarey42.bsky.social @stales.bsky.social @stuartselby.bsky.social @subatomicdoc.bsky.social @tambre.bsky.social

I have been informed by @mskcancercenter.bsky.social that they likely won’t be covered by my health insurance past July 1st, 2025. This is extremely saddening to hear because looking for and then trusting in a new health care team is not as easy as it sounds. #btsm

We're so excited for our June 8, 2025 #BTSM #skychat on #braintumor Advocacy that we've moved our start time ONE HOUR EARLIER to better accommodate schedules. We'll start at 4 PM Pacific / 7 PM Eastern instead of 5pm/8pm. We hope you can join us! #oncosky #oncsky #medsky #AYACSM #cansky

On this #NationalCancerSurvivorDay I’m doing the things I love to do: spreading awareness, networking, and connecting with others affected by (brain) cancer. If you/your loved one is facing a #Glioblastoma diagnosis, check out: @ourbrainbankforgbm.bsky.social #btsm

Day 3 started out with a panel titled “Empowering Voices: Becoming a Research Patient Advocate” Bri, my #braintumor buddy with whom I’m featured on @theabta.bsky.social media kits, was one of the panelists and rocked it! #btsm

Join us in Brooklyn on June 5 #glioblastoma #GBM #AllInMyHead #BTAM #STSM secure.givelively.org/event/ourbra...

At ASCO? Stop by our booth (#13000) or view our poster “Disparities in Glioblastoma Care: Insights from a Nationwide Survey” (May 31, Hall A, #451, 1:30-4:30pm). #ASCO2025 #ASCO #GBM #Glioblastoma #BTSM #BTAM

Meeting up with fellow #braintumor patient advocate and former #BTSM chat organizer/moderator, Jeremi Pivor, at #ASCO25 today was great. But being in the room when he got standing ovations for his #Medscape talk was the cherry on top of another successful day.

It’s been a busy second day at #ASCO25. Off to my final presentation of the day Clinical Intwgration of Therapeutic Innovation in Glioma. #btsm

Super interesting session on Precision Medicine in Glioma Treatment — Integration of Molecular Profiling to Inform Targeted Therapies. Voilà the 3 summary slides from all 3 panelists. #btsm

It's a big weekend with #ASCO25 taking place, but we're still getting ready for our June 8, 2025 #BTSM #skychat, and reflecting on 12 years of chats our theme will be #braintumor Advocacy. We hope you can join us! #oncosky #oncsky #medsky #AYACSM #cansky

Hello from #ASCO25! This should be an interesting session. #btsm

Anyone in my network attending #ASCO25? Would love to meet up ESPECIALLY if we haven’t met yet IRL. #btsm #cansky #oncsky

👕 Headed to ASCO? Come find me if you want a #MakeCancerLessShitty t-shirt! They’re soft, expressive, and mildly therapeutic. Like a hug… but with attitude. Limited supply—like everyone’s emotional bandwidth 💩 #ASCO2025 #SuppOnc #SurvOnc #CancerHumor #OncoSwag @cancersuckless.bsky.social

Hey #braintumor community! Save the date for our next chat - taking place the weekend after #ASCO25, on June 8, 2025, at 5 pm PT, 6 pm MT, 7 pm CT, 8 pm ET. We would love to see some researcher/ scientists participate! #BTSM

Honored to be a part of this community. Thanks, @thelizarmy.bsky.social for introducing me to #BTSM in 2014, onboarding me in 2018, and passing on the baton in 2023. @mcintose.bsky.social, @shawncarey42.bsky.social, @stuartselby.bsky.social and I will do our best to keep this movement going.

With #ASCO25 around the corner, let's talk about #ascofashion for a sec. What are this year's trends, colors, etc? Tagging some of those who care: @fumikochino.bsky.social @michellerothy.bsky.social @jamesfanwu.bsky.social @grocquemd.bsky.social @amandabindc.bsky.social @stephenvliu.bsky.social

What do cancer and a mountain lion have in common? Here's a piece by Caitlin Feeley (whom I met in 2015 through @firstdescents.bsky.social) on how it's like to go through cancer treatment: dreadpiratekhan.tumblr.com/post/1177584... #ayacsm #btsm #bcsm #lcsm #cansky

I've been too busy advocating that I completely forgot to tell the world that I celebrated 11 years post diagnosis last Monday! Proud GBM (because AA3 wildtype) survivor over here! #BTSM

How’s your Monday morning going? #btsm #head2hill

Half of the @btsmchat.bsky.social organizer team (@sabine-nj.bsky.social and @shawncarey42.bsky.social) participate at @braintumor.org’s 2025 #Head2Hill advocacy event in DC this week. Find any one of us if you’d like to learn more about #BTSM.

I love a month with five weeks. In a life with many recurring monthly meeting, this is the week my schedule is fairly open. What are you up to this week? #Sabine365

“Ations” by Shel Silverstein

T-10 days until my 11 year cancer anniversary! I can’t believe I’ve made it this far. #btsm

Anyone suffering from increased sinus inflammation since #Covid? #ENT professionals: Do you see more patients with these symptoms? sabine365 #Sinusitis #medsky #

I’ll be joining tonight’s #btsm chat soon. Hope you’re with me!

Tell your friends, family, fellow patients, care, partners, lab buddies, coworkers, co-PI’s, fellows, residents, nurses, social workers, and anyone else in the #braintumor community to join us! #btsm

Who do I know who will be attending Head to the Hill in DC this May? #head2hill #btsm

Congratulations to the awardees. I tried to tag them but could not find them here on #bsky. If anyone knows their handle, please share the handle(s). #btsm

Mark your calendars for the last Sunday of the first quarter of 2025! I'm honored to be the host/moderator for the inaugural #btsm #skychat. Infos on topic, date, and time below ⬇️

This is the kind of news I like to wake up to on a Tuesday morning. #btsm 🙏🏻🥳

Scan day @mskcancercenter.bsky.social. Grateful for satellite locations and the fact that I could leave with my pictures on a CD in under 15 minutes. That's how to prioritize #patientsatisfaction. #btsm #oncosky #sabine365

Hi #Braintumor Patients, Care Partners, Clinicians, Researchers, Scientists, Friends, and Supporters! We're happy to report that our #BTSM chat starter pack is ready! In case we missed you, let us know and we'll add you to the list.

Millions of Germans living overseas did not receive their mail-in ballot for Sunday’s elections. I am one of them. I know that Germany can do better and wonder what’s behind this mass mailing failure. 😡

Poll: Do you finish puzzles by shape or by color? My husband @michaelschwab.bsky.social and I disagree on this important question. #sabine365

Thanks to @stuartselby.bsky.social, I was made aware of a very interesting article about the rights and power of patient advocacy - a current international landscape. It’s too insightful not to share with the broader #btsm #btsmsky community: academic.oup.com/nop/article/...

Shout out to the @bsky.app support team. I’ve been locked out of my account for a good week, but shortly after opening a ticket, I’m able to log in again. 😍 #sabine365

@shawncarey42.bsky.social @mcintose.bsky.social, @stuartselby.bsky.social, Guy Lipof & I met tonight discussing the 2025 version of #btsm chats. The 1st Bluesky #Btsm chat will take place on 3/30..! Follow @btsmchat.bsky.social for updates, details, and more

Gentle reminder to advocates everywhere: We EXIST as patient, community, research, and policy advocates because the system(s) didn't meet everyone's needs, because science was moving too slowly, because the process didn't include adequate representation. In other words, we do hard shit all day long