Brainstorm Health
Jason Binder, Rebekah O'Dell, Angeline Giammona, Douglas Schoenberg, Erika Butler, Linda XuBrainstorm Health is where lived experience meets understanding. We explore the real questions, patterns, and moments that emerge for patients and caregivers navigating serious illness—and what they reveal about how support can be better designed.
| Platform |  | Pricing | Freemium | Publishes | Twice weekly |
|---|---|---|---|---|---|
| Issues | 163 | Founded | 2 years ago | Last Issue | 5 days ago |
| Active | |||||
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brainstormhealth.substack.comLatest Issues
Happy Anniversary
September 3 would have been our 26th wedding anniversary.
I keep thinking about that.
Last year, on our 25th, Tracy was already so sick. Cancer had taken so much from her by then. Her energy. Her strength. The ease of moving through a day...
What Happens When the Navigator Goes Home?
A new scoping review in Equity Neuroscience looks at patient navigation in neuro-oncology and finds something families living with brain cancer probably already know. The treatment plan is only one part of the experience. The rest is trying...
4:43 AM
September 24, 2024. I was lying in my parents’ guest room at 4:43 in the morning, fifteen weeks pregnant, and my mom had been in the ICU for less than a day after a severe stroke and a brain bleed.
I hadn’t slept. I’d been in there for hou...
When Was Job Blessed?
I had just left Sam in Tucson.
We got him moved in. His room was set up. He had already found the pool and the roads he would run. After everything it took to get him there—the miles, the broken-down car, Midland, changed plans, and flight...
Stable Is Not the Same as Fine
We live scan to scan. If you’ve walked this road, you know exactly what that means.
You’d think the waiting gets easier with time. It doesn’t.
Audience Metrics
Subscribers, engagement, traffic and sponsorship for Brainstorm Health.
| Subscribers | Engagement | 73 | Monthly Web Visits | ||
|---|---|---|---|---|---|
| Accepts Sponsors | Estimated Cost per Ad | ||||
Chart Rankings
How this newsletter ranks in the official Substack charts.
| #245 |
Authors
The writers behind this newsletter.
Jason Binder is a caregiver, patient advocate, and healthcare leader who created the GBM Companion after his wife’s diagnosis to provide trusted, compassionate support for others facing glioblastoma.
Teacher, Author, Consultant
Mother, caregiver, and product marketing leader writing about serious illness, decision-making under pressure, and the invisible labor families carry. Co-founder of Ember, building new ways to support what happens between appointments.
Douglas Schoenberg is the CEO of SofterWare. His wife, Lisa Schoenberg was diagnosed with GBM in August of 2024. Since Lisa’s diagnosis the Schoenberg’s new mission in life is improving the treatments and resources available for GBM patients.
Brain Tumor Advocate & Mentor | Patient Experience Consultant | Inspiring Resilience & Hope
Retired Fortune 500 executive, writer, and competitive Latin dancer navigating life with her husband’s glioblastoma. Founder of Still Here — GBM Long Term Survivors & Caregivers. Querying a memoir under pen name Lydia Young.
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