EVIDENCE-BASED GBM RESOURCES FOR FAMILIES
By Julie Crawshay · Creator of @the_neuro_farmacist
The GBM Caregiver's Resource Guide
A practical starting point for families navigating Glioblastoma
Julie Crawshay Sydney, Australia
Introduction
When my husband was diagnosed with Glioblastoma (GBM), I searched everywhere for a clear, practical guide written by someone who had actually sat in that chair.
I couldn't find one. So I created this.
This guide is not a substitute for medical advice. It is a starting point — the document I wish someone had handed me in the neurologist's waiting room. It covers the questions to ask, the organisations that can help, and the research that is actually moving the needle.
You are not alone in this.
— Julie Crawshay Sydney, Australia · @the_neuro_farmacist
The Most Important Questions to Ask Your Neuro-Oncologist
At diagnosis and at every appointment, advocate for clear answers to these questions:
1. What is the specific tumour grade and molecular profile (IDH status, MGMT methylation)?
2. Is the patient eligible for any current clinical trials?
3. What is the standard-of-care treatment plan and what are the alternatives?
4. Who is the best specialist centre or tumour board for this case?
5. What supportive care and allied health services are available?
6. When should we seek a second opinion — and where?
Write the answers down. Bring someone with you to every appointment if you can.
Organisations and Resources
CLINICAL TRIALS
• GBM AGILE — Global adaptive platform trial for GBM (gbmagile.com)
• Australian Clinical Trials — Search for active GBM trials (australianclinicaltrials.gov.au)
SUPPORT & FUNDING
• Cure Brain Cancer Foundation — Australia's leading brain cancer research charity (curebraincancer.org.au)
• Cancer Council Australia — Practical support, counselling, financial aid (cancercouncil.com.au)
• Rare Cancers Australia — Advocacy and support for rare cancer patients (rarecancers.org.au)
INFORMATION
• @the_neuro_farmacist (Instagram) — Evidence-based GBM resources curated by Julie Crawshay
• National Brain Tumor Society (US) — Comprehensive GBM information (braintumor.org)
• Musella Foundation — VirtualTrials.com for clinical trial matching (virtualtrials.org)
A Note on Caregiving
Caregiving is a full-time role that nobody trains you for.
It is also the most important thing you will ever do.
Give yourself permission to ask for help, to not have all the answers, and to take care of yourself in the process. You cannot pour from an empty cup.
If you have questions, want to connect with other GBM caregivers, or just need to know someone else gets it — find me at @the_neuro_farmacist on Instagram.
You are not alone.
Julie Crawshay
Sydney, Australia
@the_neuro_farmacist (Instagram) theneurofarmacist.substack.com linkedin.com/in/juliecrawshay medium.com/@juliecrawshay linktr.ee/juliecrawshay
Created in support of the Cure Brain Cancer Foundation and the GBM AGILE clinical trial.