Cancer Care & Advocacy
Emily was twenty-three when she was diagnosed. This part of the archive is for the families who come after her — what was learned, and what is worth asking early.
Progress on Purpose
Jessica Kouzios
Jessica Kouzios founded Progress on Purpose to help families, leaders, and organizations make thoughtful decisions when the stakes are high and the path forward is not obvious. The work is shaped by decades of executive leadership and by navigating a rare brain cancer diagnosis in her own family. She helps people think clearly, ask the right questions, and move forward with intention.
Visit Progress on PurposeFrom the National Brain Tumor Society
Recent headlines from NBTS — research, care, and advocacy for people living with a brain tumor.
- Let’s Talk About Medulloblastoma
18 September 2026
- Honoring Emmie’s Legacy Through Gray Nation Endurance
17 September 2026
- National Brain Tumor Society Awards Research Grant to KiraGen Bio to Advance a New Approach to CAR-T Therapy for Glioblastoma
17 September 2026
- FDA Approves First PET Imaging Agent for Glioma
14 September 2026
- [White Paper] Essential Information Isn’t Reaching Patients with Brain Tumors
11 September 2026
- Finn’s Ependymoma Story: Life After Pediatric Brain Cancer
31 August 2026
- How Biomarker Testing Unlocked Answers for a Rare Pediatric Brain Tumor
27 August 2026
Her diagnosis
Grade 3 pleomorphic xanthoastrocytoma — a rare brain tumour. She died on 25 February 2025, aged twenty-four.
Reading and resources
Published papers
Emily's White Papers 2025
Seven papers on care, advocacy, and what her family learned. Register or sign in to download; titles are viewable here.
Open the papers listSearch the resource library
This searches the existing advocacy library and keeps the conversation with your archive account.
Sign in to searchAsk the family
Questions enter the existing advocacy review queue. This is not medical advice or an emergency service.
Sign in to ask the family