hotspot -WSS

hotspot

author：comprehensive 2025-09-30 18:59:01 - browse：1622

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： New air purifier tech could be key to improving indoor air quality
Next article： Zyn nicotine pouches become unlikely player in latest culture war

WSS

Microbiome research is starting to find links to chronic diseases

White House pharmacy plagued with problems, investigation finds

Why Medicare shouldn’t cover every FDA

Philips to halt sales of sleep apnea machines in U.S.

Merck CEO won’t testify in Senate, citing no expertise in drug prices

Biogen walks away from Aduhelm, years after polarizing approval

hotspot

hotspot

focus

DIEP, the 'gold standard' of breast reconstruction, is under threat

Drug for rare kidney disease narrowly misses mark in clinical trial

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

Pancreatic cancer early detection could be helped by AI

Dobbs anniversary: the lost opportunity of abortion as health care

Zyn nicotine pouches become unlikely player in latest culture war

How one medical school became remarkably diverse

How Vertex's cystic fibrosis drug is changing patients' lives

Drug repurposing or repositioning? The language matters

10 reasons why health care startups fail

explore

Hearing on Medicare drug price negotiation gets unusually heated

Readout Newsletter: Vertex, Pfizer, Kura, and other biotech news

It's been 20 years since Dolly the sheep. Where's my clone?

Drug for rare kidney disease narrowly misses mark in clinical trial

Emergency workers more likely to restrain Black patients: study

Readout Newsletter: CG Oncology IPO, Eli Lilly, Tesla, Merck

focus

focus

focus

explore