There's one symptom we see often in kids with Hao-Fountain Syndrome. It can cause major issues. And in our house we're trying to do something about it.
Read More#343: Tess in the ER, Redux
Tess hasn't had a seizure in over three years. Until this week.
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#300: Chicago, in Your Living Room
We shoulda been in the Windy City this week. And we weren't. But we did go to a place that made a difference and moved the needle.
Read More#291: Named
If you're a stranger, say in a grocery store, and you meet Tess and me, I can already tell you how it's probably gonna go.
Read More#253: Festival
I just wrapped up year two of a massive project. About Tess. And USP7. And some of the other 6999 other rare diseases.
Read More#247: For Tess, Seeing Is Believing
TBE. Maybe you know what this stands for.
Read More#246: Back to Global Genes Pt 2
Copying homework is exactly what you should do.
Read More#243: Hiring Bruce Banner
The future is now. We are about to hire Bruce Banner.
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#218: This Is Bedtime
We've had a rough couple of days for our girl. Simply put, Tess is not her usual happy self.
Read More#196: More Stories from the Land Where Cures Are Found
Even MORE stories from Vegas, all about our USP7 conference, including a big announcement about what comes next.
Read More#184: Aftermath
Checking in with Tess's neurologist. A guy we have some history with, actually. Trying to get some answers about the T-Bird.
Read More#183: Tess in the ER
Something happened to Tess. Something that fills us with dread.
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#179: 365 Shots
A girl. A prediction. A wrong prediction. And a really, really weird result after the one-year mark.
Read More#171: Jackie Chan, Prohibition's End, and Us
April 7th. The birthdays of Billie Holiday, Jackie Chan, and Russell Crowe. Also the day that prohibition ended in the US. And now a red-letter day in our house as well.
Read More#163: Fever
Tess is feeling under the weather, and we know it right away.
Read More#151: No Such Thing As Full - Hyperphagia and Pica
Trying to solve two problems. Both about hunger. Hunger that doesn't make any sense. And has no end.
Read More#150: Mysterious Man in Hospital Room
We carried Tess for the first 5 years of her life. Because her hip issues prevented walking. It was a dark time for our heroes. Are we about to return to those days?
Read More#145: Silver Screen Bean
Showing our film about Tess at the rare disease film festival. What if you were in a room, an audience, full of people who get it? Then what?
Read More#144: Gala part 2
Part 2 of our story about the gala. They came, they laughed, they bid on stuff, they ate, they drank, and above all, they showed the love. Big time.
Read More#129: Talking to the Fine Folks at Ibotta about Tess and USP7
If you’re in the Tess Army already, it’s because you care. You know Tess personally, or you’ve joined us and been following our story. But how do we get strangers to join?
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