hotspot -WSS

hotspot

author：focus 2025-09-14 11:49:07 - browse：5949

Nathan Guo, left, and his wife Ada Lio encourage their 17-month-old son, Lucas Guo, to take steps in his gate trainer at their home in Somerville, MA on February 16, 2024. Lucas has one of the world's rarest diseases, ZTTK Syndrome — Lucas Guo, a boy with a rare neurological condition called ZTTK, is encouraged by his father, Nathan Guo, and mother, Ada Lio, to take some steps. Craig F. Walker/The Boston Globe

SOMERVILLE — At 19 months old, Lucas Guo has never crawled, walked, or stood by himself. He babbles but can’t say words. He struggles to chew and swallow. He gets most of his nutrition through a feeding tube attached to his belly.

Lucas has one of the world’s rarest diseases, ZTTK syndrome, a complex neurological disorder caused by a genetic mutation. Scientists have documented only about 60 cases worldwide and estimate that, at most, it afflicts several hundred people — far too few to encourage drug makers to find a treatment.

That economic reality has driven Lucas’s parents, Ada Lio and Nathan Guo, to take things into their own hands. Working through a small foundation, they are trying to raise $10 million to develop a treatment or cure for ZTTK in five years.

Get unlimited access to award-winning journalism and exclusive events.

Subscribe Log In

Previous article： Psychedelics group wrestles with new pharma identity
Next article： PBM executives asked to testify by House panel

WSS

Deliver public health messages at the right time

Readout LOUD podcast: Pharma in Washington, Alnylam, and Gilead

Obamacare plans could cover weight loss drugs

Reporting on presidential health from Reagan to Trump and Biden

Measles policy set amid Florida outbreak alarms vaccine proponents

Deliver public health messages at the right time

focus

hotspot

entertainment

Over 800 arrested across France in 3rd night of riots after fatal police shooting of teen

WATCH: Why do our ears pop?

Wildfire smoke exposes gaps in outdoor worker protections

PBM executives asked to testify by House panel

Psychedelics group wrestles with new pharma identity

FDA warns medical device makers about rise in fabricated data

Trump demands the U.S. pay no more for drugs than other countries … again

PBM executives asked to testify by House panel

George Santos makes 1st court appearance after pleading not guilty to 13 counts

Weight loss drugs aren’t covered by Obamacare. That may change

knowledge

How a small hospital in rural Puerto Rico survived Hurricane Maria

Most antidepressants don't work on kids, teens, study finds

Hospitals are piloting generative AI tools as regulators play catch

Weight loss drugs aren’t covered by Obamacare. That may change

Abridge raises $150m as clinical notes automation market heats up

As billionaires fund anti

entertainment

entertainment

leisure time

Wikipedia