Wolves in the Inbox: When Wall Street Preys on Rare Families
The Things They Don’t Tell You
When treatment comes to the table, investments rule and patients become the bottom line. Here’s a truth no one warns you about: stock brokers are pretending to be rare disease families to fish for insider information. It needs to be dicsussed because so many drugs are on the table and rare biotech is the rage.
Yes, it is as disgusting as it sounds.
I was hit by a deep fake a few years ago. It shook me. I even called the lead advocate at the company to ask how to protect myself. Their answer? “You don’t have insider information.” But these fake profiles were still asking me about the drug and my daughter. That’s when I realized how predatory this was.
If anything happens in industry, my inbox lights up. They slide in claiming they have a daughter or niece with galactosemia. They share a quick sob story, hoping I will open up. I have gotten very good at reading in between the lines…. two questions in, the act falls apart. Real rare families want connection, guidance, and support. These fakes want “approval timelines” and “what’s next.”
And their profiles give them away: stock chatter, day trading tips, not a single post about the messy, exhausting, beautiful reality of living rare.
Here is the irony: ultra rare is the riskiest investment there is. There is no clear or consistent FDA pathway for conditions like galactosemia. Each case is judged differently, sometimes depending on who is in the room. That is not a goldmine, it is a gamble.
Stop Wasting My Time
My time belongs to families who are drowning: navigating newborn screening delays, battling insurance denials, advocating for therapies, fighting for speech services, fertility, and disability coverage. They deserve every ounce of energy I can give.
When someone poses as a rare parent just to probe me for trial details, it is not harmless. It steals from real families. It takes away the help they desperately need.
This is not just insulting. It is dangerous. Insider trading is illegal. And using fake sick kid stories as your bait? That is predatory.
The Common Sense Test
Want to know how I spot them? It is not complicated.
Profiles full of stock picks. Rare parents post about real life, not market tips.
Surface level stories. A real parent knows newborn screening. A faker stumbles.
Weird urgency. Families want hope. Fakes want dates, deadlines, “inside info.”
It is that simple.
What To Look For And What To Do
Red Flags:
Vague family connections: “My niece has your disease…” but no real details.
Overeager questions: “When will FDA approve this?” “What are trial results?”
Social media timelines full of stocks, biotech chatter, or market predictions.
No lived experience: they cannot answer simple questions about therapies, newborn screening, or daily care.
What To Do:
Do not engage beyond a polite “I do not discuss trials or investments.”
Block and report the account if it feels predatory.
Protect your energy. Your time is for real families, not for Wall Street fishing expeditions.
If approached for a paid consult, know your worth. Do not settle for token money when your lived expertise is invaluable.
If you are new to this, here’s what you should know: families can always share their own experience in a drug trial. Things like travel burden, side effects, or how it impacts daily life — that is your story, and you own it.
If you are on the foundtion side of it, be careful. Not all of us are experienced and thats ok. Maybe just you are starting a foundation, or just starting relationships with industry who have drug development. Industry does not tell you anything unless they will have paper work in place and educate/tell you why you DONT SHARE.
What you usually cannot share are trial results, numbers, or anything the company has not made public. Companies almost never disclose insider information without a clear NDA (non disclosure agreement) in place. Everything I have ever found out was the day of the press release.
Protect yourself. Talk about your journey, but do not feel pressured to share data you do not have access to or that might be considered confidential. If in doubt, stick to what is already public and personal.
My Message to the Wolves
To every broker sliding into my messages pretending to be a rare caregiver: Stop. I see you. You are not welcome here.
If you want patient insight, do it the right way. Ask for a consult. Sign a contract. Pay families fairly for their expertise. Do not dangle $50 for knowledge you will turn into millions. Rare families deserve dignity and fair compensation, not exploitation.
Because here is the truth: rare families already carry enough. We do not exist to feed Wall Street greed.
Stop abusing our hope. Stop wasting our time.
