leisure time -WSS

leisure time

author：explore 2025-08-24 05:25:26 - browse：9566

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： Peter Hotez and the public health issue of online harassment
Next article： Senate committee scrutinizes Medicare Advantage brokers

focus

WSS

Evacuations in place as 3 wildfires burn in eastern Washington state

Trump's false claims about Georgia's 2020 election long debunked

ActiGraph execs on goal of drug approvals with digital endpoints

Clinical trials must include more disabled people

Trump cancels press conference intended to dispute Georgia election interference charges

FDA struggles to regulate food additives, sometimes for decades

leisure time

leisure time

hotspot

Medicare proposal to cover medical devices draws a mixed reaction

The boys, now 6, who are gene therapy’s ‘edge case’ problem

What does generative AI mean for health care? We asked experts

UnitedHealth’s board chair also owns a personal investment firm

Hepatitis C has a cure — but many Americans still lack access to it

The boys, now 6, who are gene therapy’s ‘edge case’ problem

Medicare details structure of new drug price negotiation program

Lung cancer is America's deadliest cancer. Yet so few get screened

How one medical school became remarkably diverse

Trump's false claims about Georgia's 2020 election long debunked

focus

STAT Summit: GSK CEO on pharma giant's new direction

STAT Readout Newsletter: Today's biggest biotech updates

Liz Cheney makes 1st public comment since Trump's election interference indictments

Special counsel raises new conflict of interest concerns for De Oliveira's lawyer

Majority of Americans think Trump's Ga. election interference case is serious: POLL

Studies point to risks of excluding people with obesity from drug trials

leisure time

focus

focus

knowledge