HHS abruptly cancels CDC meeting with RFK Jr., anti-vaccine activist as scrutiny mounts www.statnews.com/2025/09/17/r... via @statnews.com

A hopeful thread! Some of my favs:
HIV treatment is better by leaps and bounds, and now 2x year injections can prevent people from contracting it! www.npr.org/sections/goa...

CRISPR has cured, CURED, sickle cell anemia in patients for at least a year! www.scientificamerican.com/article/fda-...

Patrick Soon-Shiong has (still) not cured cancer
www.statnews.com/2025/09/11/s...

The first child treated with a new gene therapy designed to safely reach deep into the brain died just days after dosing

If tied to treatment, this would be the 5th death linked to gene therapy in the past year. Since 2019, there have been at least 13

www.statnews.com/2025/09/10/c...

Love this tracker from @isabellacueto.bsky.social and @jaspar.bsky.social chronicling all of RFK's promises on chronic disease and public and how much he's delivered — or not — on them
www.statnews.com/2025/09/10/r...

Big shakeups to the childhood vaccination schedule could be nearing
via @elaineywchen.bsky.social
www.statnews.com/2025/09/03/c...

Wild to see a thread about me. I think the broader topic (as Jason points out) is what does the future of preventive medicines look like for at risk gene carriers? I also hope this gives people some hope to those dealing with devastating and (previously) unactionable inherited genetic diseases.

Trump proposes to rescind AIDS funds. Congress rejects the proposal. So Trump and his henchman Russ Vought just refuse to spend the money and try to hide that decision from Congress and the public. www.nytimes.com/2025/08/21/h...

Trump executive order seeks to centralize control of grantmaking under political appointees www.statnews.com/2025/08/08/t... via @statnews.com

Rare disease patients have been caught in Trump crackdown on foreign grant awards

An important story from @mmolteni.bsky.social
www.statnews.com/2025/08/06/n...

Flagging a @statnews.com promo: 50% off annual subscriptions.

News subs can be pricey, but the team here works super hard to deliver value for the investment.

marketing.statnews.com/stat-plus-au...

Special rates also available for students, nonprofits, and others.
www.statnews.com/stat-plus/

Prevention — not treatment — for neurodegenerative diseases.

Jeff appears to have been the first test case. Five years later, the early results are in:
www.statnews.com/2025/07/28/a...

It was also a bold first experiment of an approach that may one day be applied to thousands of other people living with what can feel like ticking time bombs wired into their DNA: Genes for Huntington's disease, familial forms of Alzheimer's and ALS, Prion disease, among others

But the results were "abnormal." Given his gene, the doctor feared he was seeing early, silent signs of ALS. He wanted to put Jeff on the drug, despite the serious risks it might entail. The drug, largely untested, could do significant damage.

It was an effort to save Jeff's life and prevent ALS

Then, in 2020, two of his sisters began showing symptoms. Thanks to a chance-meeting, they were each given early access to an experimental drug designed to suppress the toxic gene.

Jeff then got his own nerve-function test. The results worried his neurologist. He didn't have ALS — not yet at least

A 🧵: Last week, I wrote about Jeff Vierstra, who carries the gene for a devastating, rare form of ALS. The disease killed his mom and all three of her siblings, along with relatives dating back to the 1800s.

Then, in 2020, two of his sisters began showing symptoms.

He didn't have ALS. At least, not yet. But clearly some of his nerve cells had died. Would an experimental drug prevent him from getting it?

Great piece from @jasonmast.bsky.social

www.statnews.com/2025/07/28/a...

Last month, I wrote about a new Trump policy requiring NIH to fund multiyear awards upfront, and concerns that it would shrink the number of new grants NIH could support. Those fears are now being realized. From me, @aniloza.bsky.social, & @angusrohan.bsky.social :

www.statnews.com/2025/07/29/n...

In an event celebrating the 35th anniversary of the passage of the Americans with Disabilities Act, HHS Secretary Kennedy spent 8ish minutes talking about how his family started the Special Olympics, his disabled aunt Rosemary, and democracy. He then posed for a picture.

He did not mention the ADA.

Thanks Alyssa!

The dust-up between Sarepta Therapeutics and the FDA has rightly generated all kinds of headlines lately. But this one, from @jasonmast.bsky.social, is about those most affected by it all: Duchenne patients and their families.

www.statnews.com/2025/07/24/d...

@jasonmast.bsky.social hears the confusion, fear, and heartbreak for Duchenne families across the country. His story at @statnews.com

www.statnews.com/2025/07/24/d...

Are you a trans journalist trying to change your byline? You should check out this guide I have been writing for the last few months for @theopennotebook.bsky.social, which is full of tips/tricks from me and many other trans journalists.

www.theopennotebook.com/2025/07/22/h...

We're a journalist-founded website chronicling the #LongCOVID crisis. Unlike others, we continue to report on the impact of the ongoing COVID-19 pandemic. No denial. No minimizing. No gaslighting.

Here's our editorial team + writers who've contributed to our publication. go.bsky.app/8zDRx6Y