Between the Beats
Research translator for families of CHD/cCHD children. Mom to a cCHD child. 3 Master's Degrees (International Relations, Marketing, MBA). 25yrs experience in international project finance; risk assessment + strategy.
| Platform |  | Pricing | Freemium | Publishes | Daily |
|---|---|---|---|---|---|
| Issues | 30 | Founded | 3 months ago | Last Issue | 12 days ago |
| Active | |||||
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betweenthebeats.substack.comLatest Issues
CHD and Growth Failure — Or, The Second-Gear Baby
Have you ever tried driving at 50mph in second gear?
If you have (no judgment), you know exactly what it sounds like: the engine screaming, the RPMs redlining, the fuel gauge dropping like a stone, and the car barely keeping up with traffi...
Yelling From the Rooftop - Part 2
How one researcher's fraud nearly silenced the most promising therapy for HLHS babies — and what a money trail through tax filings reveals about who really decides which children get saved.
Continued from Part 1
The CHD-GERD Connection — Or, My Poltergeist Baby
We were at the Montreal Cardiac Institute, walking in from the waiting room to go talk to my daughter’s surgeon about her upcoming Glenn surgery. Aveline was maybe 3 months old, tops. She looked like a tiny Buddha; all rolls and baby fat, w...
Yelling From the Rooftop - Part 1
How one researcher’s fraud nearly silenced the most promising therapy for HLHS babies — and what a money trail through tax filings reveals about who really decides which children get saved.
I want to tell you about a conversation I had a f...
🔍 DEBUNKED: “70,000 Fontan Survivors Worldwide” — But Whose World?
The Number
I’ve been reading research on my daughter’s condition for a good long while now. Years. Got Google alerts for tricuspid atresia, fontan, failing fontan, congenital heart defects. And every other conference abstract, pharma fi...
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Fontan mom. Research translator. I don't take "don't worry about it" for an answer.
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