OurBrainBank Glioblastoma Bill of Rights

Note: below list is draft currently being updated as of May 2026

We the patients have the right to:
Personalized care plan
A custom plan developed before initial treatment — tailored to you and your tumor. Discussion of all options and every FDA-approved treatment (including Tumor Treating Fields).

Timely tumor testing & storage
Tumor biomarker testing (individual makeup, including mutations) before treatment begins. Fast-tracked analysis. Tissue from initial surgery frozen for potential use.

Second opinion
A second opinion before treatment and again at any point. A good doctor will welcome this and a good healthcare system will enable it.

Access to clinical trials
Up-to-date, accurate, and personalized information about emerging treatments. Help with related travel and expenses. Clinical trials offered at diagnosis and if the tumor recurs.

Specialist care
Tumor removed by a neuro-surgeon. Treatment guided by a neuro-oncologist. Access to specialists like radiation oncologists and neuro-pathologists. Coordinated and communicative care team.

Quality of life support
Psychological help (care partners too) and support groups. Palliative care — to ensure good quality of life, minimize suffering, and manage pain. Hospice care — comfort rather than curative treatment (when appropriate)

Affordable high quality care
Access to affordable and effective treatment. Transparency about outcomes. Help with insurance, benefits, housing, transportation. Information about workplace rights (short and long-term disability, accommodations).

Easy access to records and ability to donate data
Ease in obtaining health records — including fast-tracked MRI results — and transporting own data. Ability to donate data and tissue for research.

OurBrainBank Style and Brand Guide 2026

Mission: 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 the power of patients and data. 

Tagline: Moving glioblastoma from terminal to treatable. Powered by patients.  

Story and fundraising appeal
Imagine your whole life changing in a split second. Going from a healthy, happy, life and career to being told you have a few months to live. Imagine finding there’s no cure. That different doctors have radically different ideas of what you should do. That the internet is full of confusion, technical medical jargon, and stories of despair. 

That’s what happened to our founder, Jessica Morris (1963-2021), and to others diagnosed with glioblastoma, a highly aggressive brain cancer. OurBrainBank is taking the negativity of a GBM diagnosis and turning it around. We’re providing hope for a better today, and a longer tomorrow.  

We’re actively seeking funds from a range of potential donors. Funding for GBM nonprofits is tiny. 

Programs 

• Patient Research and Data Collection 

• • • Collect data directly from people affected by GBM to aid research 
      • DANO—Digital Assessment Neuro-oncology (passive data collection)
      • Surveys (treatment disparities, quality of care, personalized care)
      • PRO (Patient Recorded Outcomes) [pilot study using a free app]
      • OurDataBank

• Advocacy

• • Raise awareness about glioblastoma and patients’ needs
    • GBM Bill of Rights
    • OurStoryBank 
  • Push for reform with governments, pharma and device makers, medical professionals, hospitals, insurance companies

• Patient Resources

• • Inform and help GBM patients — especially the newly diagnosed
    • Information about best possible care — clinical trials, second opinions, all FDA-approved treatments, tumor testing
  •  Educate healthcare professionals and the public about GBM

Medical & Technical Advisors
OurBrainBank is advised by top doctors and researchers from Columbia, Harvard, and other institutions. Headed by Fabio M. Iwamoto MD, Deputy Director, Division of Neuro-Oncology, Columbia University. Full list of advisors 

Website and Socials
OurBrainBank.org
Facebook.com/OurBrainBank 
Facebook.com/groups/OurBrainBank  
Twitter.com/OurBrainBank
YouTube.com/c/OurBrainBankForGlioblastoma
Instagram.com/OurBrainBankForGlioblastoma
GiveLively.org/donate/ourbrainbank-inc
Linkedin.com/company/OurBrainBank
Newsletters
Pinterest 
Tiktok
Tiltify

Style guide
Language:

• “OurBrainBank” always one word, initial caps  
• Non-profit (hyphenated) in US, charity in the UK 
• Caregivers (one word) or care partners or carers (UK)
• Observe US and UK spelling (tumor/tumour etc.) 
• Neuro-oncologist, neuro-surgeon (US hyphenated, UK one word) 
• Glioblastoma (not capitalized unless at beginning of sentence) on first mention, GBM on subsequent mentions  

Tone: 

• Positive and upbeat, yet realistic and blunt (as appropriate)
• More empowering than cheerleading 
• Avoid “cure” instead use words like “new and better treatments” 
• Avoid “battle” and “fight” metaphors 
• “People living with glioblastoma” rather than “patients” (flexible)
• OBB is small but mighty, can speak candidly

Logo/fonts/colors/specs/registration mark

• Logo: square with “OurBrainBank” or rectangular with tagline or square
• Docs font: docs: Arial 12 pt; Powerpoint/decks: Calibri Light (or bold), dark grey
• Logo/graphic colors: medium light blue: 
• Website fonts: Osward and Poppins
• Website colors: Pink #e22681 Dark grey: 33333 light grey
• Logo 
  • Colors: medium-light blue: #42b2e5  light blue: #43b2e5, dark: #205a6e 
  • Font: DIN Alternate Bold 
• https://ourbrainbank.org/logos
• As of 2006, OurBrainBank® is a registered mark, use ® (Mac: option R) as appropriate

Grammar/punctuation

• Numbers: one to ten, write out, 11+ in numbers 
• Em dashes — one space before and after (mac keystroke: option/shift/- ) 
• One space (not two) following full stop (eg period)
• Quote marks: 
  • US: double: “Like this, with punctuation inside the quote.”
  • UK: either US style or UK: ‘Like this, with punctuation outside the quote’.
• Oxford/serial comma: “OurBrainBank helps people living with GBM today, their care partners, and contributes to GBM research.” 
• When quoting, use either italics or quote marks “blah blah” (not both) 

Legal

• EIN 82-2307232 
• US: Registered non-profit 501(c)3
• UK: Registered Charity: 1184699
• Address: 
  • US: legal/checks: OurBrainBank, Inc. P.O.Box 835 Telluride, CO 81435-0835
  • UK: OurBrainBank UK 12 Beverley Road London W4 2LP