OurBrainBankForGlioblastoma
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ourbrainbankforgbm.bsky.social
OurBrainBankForGlioblastoma
@ourbrainbankforgbm.bsky.social
230 followers 230 following 28 posts
OurBrainBank is an innovative patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients. It’s the first non-profit created by, with, and for people living with this aggressive brain cancer. We believe in data.
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ourbrainbankforgbm.bsky.social
Please consider a gift to help OurBrainBank for Glioblastoma on December 2nd for Giving Tuesday.
secure.givelively.org/donate/ourbr...
secure.givelively.org
November 24, 2025 at 7:40 PM
ourbrainbankforgbm.bsky.social
Visit our poster, attend a session, meet our Ex. Dir. Kelli Duprey, and learn about shocking disparities in GBM care in the USA.

Proud to be selected for the 2025 Health Disparities & Quality Improvement Award
#GBM #glioblastoma #GBMDisparities #SNO2025
“Disparities in Tumor Treating Fields (TTFields) Awareness, Access, and Patient Experience: Findings from a National GBM Survey” (Abstract DISP-34) Oral Session: Friday, November 21, 11:30am-12:30pm Poster Session: Saturday, November 22, 11:45am-1:05pm “Disparities in Glioblastoma Care: A National Survey on Access to Trials, Testing, and Informed Decision-Making” (Abstract QOL-35) Oral Presentation: Saturday, November 22, 4:30-5:30pm Selected for the 2025 Health Disparities & Quality Improvement Award
November 19, 2025 at 1:55 AM
ourbrainbankforgbm.bsky.social
GBM Disparities Survey: Access Barriers
GBM Disparities: Access Barriers 54% didn’t discuss a second opinion with their doctor 66% were never offered a clinical trial 22% were denied treatment by insurance or had difficulty affording care 36% were never informed about tumor treating fields (Optune)
September 12, 2025 at 7:35 PM
ourbrainbankforgbm.bsky.social
September 5, 2025 at 8:01 PM
ourbrainbankforgbm.bsky.social
September 5, 2025 at 8:01 PM
Reposted by OurBrainBankForGlioblastoma
braintumor.org
More than 13,000 Americans will be diagnosed with #glioblastoma in 2025, yet treatments and survival rates have remained largely unchanged for decades.

📣 This #GBMDay, reshare these stats to raise public awareness and inspire action.

Learn more: braintumor.org/events/gliob...
July 16, 2025 at 4:01 AM
ourbrainbankforgbm.bsky.social
Today, July 16, 2025, is Glioblastoma Awareness Day.

You can help:
- Share your GBM story
- Post about GBM Day (ourbrainbank.org/gbm-day-2025)
- Donate to OurBrainBank so we can launch our new study!
#GBM #glioblastoma #GBMDay #GBMAwarenessDay OurBrainBank.org/give
Today, July 16, 2025, is Glioblastoma Awareness Day. You can help: - Share your GBM story - Post about GBM Day (ourbrainbank.org/gbm-day-2025) - Donate to OurBrainBank so we can launch our new study! #GBM #glioblastoma #GBMDay #GBMAwarenessDay
July 16, 2025 at 5:30 PM
Reposted by OurBrainBankForGlioblastoma
maddow.bsky.social
"Tanner, a chemist at the Univ. of Mississippi working to develop a novel approach for treating glioblastoma, was notified in April that the grant was terminated.

“I would like to cure brain cancer,” Dr. Tanner said. “I think that's not particularly controversial.”

www.nytimes.com/interactive/...
The Gutting of America’s Medical Research: Here Is Every Canceled or Delayed N.I.H. Grant
Some cuts have been starkly visible, but the country’s medical grant-making machinery has also radically transformed outside the public eye.
www.nytimes.com
June 8, 2025 at 6:12 PM
Reposted by OurBrainBankForGlioblastoma
sabine-nj.bsky.social
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
June 7, 2025 at 4:55 PM
ourbrainbankforgbm.bsky.social
In the NYC area? Limited tickets for our June 5th event are still available.
#glioblastoma #JessicaMorris #AllinMyHead #GBM
June 3, 2025 at 9:58 PM
ourbrainbankforgbm.bsky.social
At ASCO? Stop by our booth and meet Ex. Dir. Kelli Duprey and learn about our survey about GBM care disparities in the USA.
#ASCO #ASCO2025 #ASCO25 #GBM #glioblastoma #GBMDisparities #GBMRights #BTSM
June 2, 2025 at 7:55 PM
Reposted by OurBrainBankForGlioblastoma
sabine-nj.bsky.social
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
June 1, 2025 at 7:55 PM
ourbrainbankforgbm.bsky.social
At ASCO? Stop by our booth and meet Ex. Dir. Kelli Duprey and learn about our survey about GBM care disparities in the USA.
#ASCO #ASCO2025 #ASCO25 #GBM #glioblastoma #GBMDisparities #GBMRights
June 1, 2025 at 7:27 PM
ourbrainbankforgbm.bsky.social
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
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
May 31, 2025 at 6:18 PM
ourbrainbankforgbm.bsky.social
Join us in Brooklyn on June 5
#glioblastoma #GBM #AllInMyHead #BTAM #STSM
secure.givelively.org/event/ourbra...
Join us in Brooklyn on June 5 for an evening of readings and conversional with: • Sabine Schwab, PhD, 11-year GBM survivor, advocate • Dr. Fabio Iwamoto, Neuro-oncologist, Columbia • Ed Pilkington, GBM Caregiver & Jessica's husband #glioblastoma #GBM #AllInMyHead #BTAM #BTSM https://secure.givelively.org/event/ourbrainbank-inc/a-celebration-of-all-in-my-head-by-jessica-morris
May 23, 2025 at 7:36 PM
ourbrainbankforgbm.bsky.social
If you're at #Head2Hill, say hello to Kelli Duprey, Ex. Dir. of OurBrainBank for Glioblastoma and learn about our survey showing disparities in GBM care across the USA.

#gbm #glioblastoma
#GBMRights #braintumorawarenessmonth #ourbrainbankforglioblastoma
#BTSM #NBTS
May 6, 2025 at 4:02 PM
Reposted by OurBrainBankForGlioblastoma
btsmchat.bsky.social
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.
May 4, 2025 at 11:50 PM
Reposted by OurBrainBankForGlioblastoma
shaunlintern.bsky.social
Doctors at one of England’s leading cancer hospitals have launched a clinical trial of headgear that emits electric fields. The pulses disrupt cell division in glioblastoma — one of the deadliest forms of brain cancer www.thetimes.com/article/23d3...
Electric ‘swimming cap’ could combat brain tumours
The NHS is trialling a headset that emits electrical fields that disrupt cell division, and it may improve survival rates if used early in treatment
www.thetimes.com
April 13, 2025 at 7:09 AM
Reposted by OurBrainBankForGlioblastoma
thesaturdaypaper.com.au
After being diagnosed with an inoperable glioblastoma, The Saturday Paper’s editorial cartoonist, Jon Kudelka, took time to consider what really matters – and it is not politics.
Lessons from political cartooning
After being diagnosed with an inoperable glioblastoma, The Saturday Paper’s editorial cartoonist took time to consider what really matters – and it is not politics.
www.thesaturdaypaper.com.au
April 11, 2025 at 1:02 AM
ourbrainbankforgbm.bsky.social
Saddened to hear about another accomplished person lost to glioblastoma. Assuming a congress person would have access to excellent healthcare, did she receive everything we advocate for via our GBM Bill of Rights? (Link to #GBMRights in the comments.)

www.npr.org/sections/sho...
Doctors still seeking cure for brain cancer that struck former Utah Rep. Mia Love
Mia Love, the first Black Republican woman elected to Congress, died three years after being diagnosed with glioblastoma, a brain cancer that is nearly always fatal.
www.npr.org
March 31, 2025 at 9:30 PM
ourbrainbankforgbm.bsky.social
At the GBM Drug Development Summit? Stop by our poster, meet Executive Director Kelli Duprey, and learn about how people in the USA are being treated — most were not offered a chance to participate in a clinical trial.

#GBMSummit #GBMDisparities #GBM #glioblastoma
GBM treatment disparities chart, most in our survey were not offered a clinical trial
February 19, 2025 at 10:21 PM
ourbrainbankforgbm.bsky.social
The Al Musella Foundation Copayment Assistance Program helps people with brain cancer. Learn more at brainumorcopays.org and follow the directions to apply.
brainumorcopays.org
January 28, 2025 at 4:45 PM
ourbrainbankforgbm.bsky.social
Anyone who's had a loved one with glioblastoma knows the heartbreaking toll it can take on care partners.
December 30, 2024 at 6:05 PM
ourbrainbankforgbm.bsky.social
Not GBM specific, but helpful in general.
mims.bsky.social Christopher Mims @mims.bsky.social · Dec 28
Currently trying to find nursing home type facilities that can accommodate someone in their 70s who has a complex neurological condition and needs high acuity care for the remainder of their life, which probably won’t be long.

Why is this so hard. Any advice welcome.
December 28, 2024 at 8:36 PM
Reposted by OurBrainBankForGlioblastoma
shitscaredmum.bsky.social
If, like Laura I was diagnosed with #glioblastoma I’d seriously consider #AssistedDying

Yet I’d have tried to talk her out of making the same choice

Given a 12mth prognosis she lived well for 4yrs, travelled, studied & touched many lives

Her death was hell, but she lived an entire life #bothsides
November 17, 2024 at 12:08 PM