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 | 167 | Founded | 2 years ago | Last Issue | 4 days ago |
| Active | |||||
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brainstormhealth.substack.comLatest Issues
I Wish We Had Ember Health When Karen Was Diagnosed
You don’t know what questions to ask when you don’t even understand what you’re facing.
On May 12, 2023, my 52nd birthday, I took my wife, Karen, to the emergency room.
A few weeks earlier, she had told me she was forgetting her words. I...
The New Questions GBM Families Are Asking Us Now
Three months of new conversations reveal a shift from understanding the disease to managing everything it demands
Three months of new conversations reveal a shift from understanding the disease to managing everything it demands
We didn't plan to expand
Ember is now in six disease areas. Here's how that happened, and what we're being careful about.
We built Ember in glioblastoma because it’s one of the hardest cancers a family can face, and because it’s where we each lost our own people....
96% of Myeloma Patients Want a Voice in Their Care.
A new study published in PLOS One looked at shared decision-making in multiple myeloma. The headline finding is hard to ignore: 96.1% of patients said they wanted to be involved in decisions about their treatment.
But wanting to participat...
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...
Audience Metrics
Subscribers, engagement, traffic and sponsorship for Brainstorm Health.
| Subscribers | Engagement | 73 | Monthly Web Visits | ||
|---|---|---|---|---|---|
| Accepts Sponsors | Estimated Cost per Ad | ||||
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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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