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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 8h

Earlier this week, Jenn and Amelia spent some arts and crafts time together to help celebrate Filipino American History Month!

🇵🇭

A photo of Amelia with her colored illustration of the Filipino flag

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

Buy 3, get 4th free? I mean, a good deal’s a good deal.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

This was the first (and so far only) movie I’ve ever watched 3 times over 3 consecutive days. Utterly fascinating film.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

Oof. I once worked late into the night on an embargoed feature that was full of facts and figures — and a lot of them were either incorrect or improperly sourced and it was an adventure getting it under control.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

A fascinating and sobering explainer on the vicious cycle of misinformation we’re dealing with (that also briefly touches upon why it’s so hard for media folks — like me! — to find work right now).

AI Slop Is Killing Our Channel

YouTube video by Kurzgesagt – In a Nutshell

youtu.be

Reposted by Philip Palermo (Batten Disease is my scary name)

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

Despite its many flaws, social media has connected my wife and I to other families dealing with the horrors of Batten Disease. We’ve supported each other, shared tips for dealing with insurance, and donated medical equipment. We’ve also connected with the handful of researchers working on cures.

Conrad Hackett @conradhackett.bsky.social · 2d

Has anything great happened in your life because of social media?

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

Vegas should have put out odds for possible product tie-ins. (Unless they did. In which case: Good on them!)

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 1d

Despite its many flaws, social media has connected my wife and I to other families dealing with the horrors of Batten Disease. We’ve supported each other, shared tips for dealing with insurance, and donated medical equipment. We’ve also connected with the handful of researchers working on cures.

Conrad Hackett @conradhackett.bsky.social · 2d

Has anything great happened in your life because of social media?

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 2d

Amelia got her flu shot today because protection is important — especially for medically fragile children! And then we took Grammie out for a sunny walk around Dune Peninsula.

💉 ❤️ 🩹

Amelia sits in her wheelchair awaiting a flu shot.

Amelia with her parents and Grammie at Dune Peninsula

Amelia at Dune Peninsula with Mt. Rainier in the background

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 3d

If this ends up being an ad for Royal Kingdom……

Reuters @reuters.com · 3d

LeBron James: 'Second Decision' coming Tuesday reut.rs/4pX4JTh

LeBron James: 'Second Decision' coming Tuesday

LeBron James sparked a flurry of social-media speculation on Monday after saying he would announce his "Second Decision" a day later.

reut.rs

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 3d

One more moon shot, this time from tonight.

(Taken with an iPhone 16 Pro attached to a Hestia scope in RAW mode and edited in Photoshop)

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 4d

Moon looked cool tonight.

(📸: IPhone 16 Pro + Hestia Scope)

A photo of a nearly full moon on a clear night.

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 4d

After we got Amelia into her game day gear at the half, Seahawks went on to score 28 points (and, yeah, had that interception). She did her part though!

Amelia in full Seahawks attire for Sunday’s game. Her feeding tube and pulse-oximeter cord are visible.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 4d

I knew it sounded familiar.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 5d

It was a cloudy day, but we took Amelia for a walk around the Panther Lake Trail and then had dinner by the water at Dash Point. No whale sightings this time!

Amelia in her wheelchair by Panther Lake in Federal Way, WA.

Amelia in her wheelchair along the Panther Lake Trail in Federal Way, WA, with her parents.

Amelia in her wheelchair along the Panther Lake Trail in Federal Way, WA.

Amelia in her wheelchair by the Dash Point State Park in Federal Way, WA.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 5d

Apparently, the only time I ever want cable is whenever the Mariners are in the playoffs.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 5d

Wait, does this mean video editors have that kind of power? I’m definitely updating my LinkedIn.

Cooger & Dark’s Pandemonium Shadow Podcast @gonebabygone.bsky.social · 5d

Genuine medieval peasant brain who gets to vote on whether we go to war

I've kind of dug into this a little bit more, and the way they do it is they do these scenes, and they switch them around very fast. In the old days [in the era of comedian and producer] Andy Griffith, it was just one camera and it was great. And [modern producers] do different scenes and it's moving around every second, and that releases certain things in young children's minds, and we need to find out why are they doing like this because this is contracting their brains, this is molding their brains.

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 7d

I was trying to say the pharmacy hadn’t mixed the oral solution for Amelia’s “Famotidine,” but autocorrect had other plans.

A screenshot of a text message that reads, “They forgot to mix the Floridians.” It was supposed to say, “They forgot to mix the Famotidine.”

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 7d

Shout out to everyone who’s able to enjoy Ghost of Yōtei on day one! It’s at the top of my list, but I need to secure some stable income first before I take time to explore what looks like an amazing photo mode (and I guess the game itself looks cool too).

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 8d

The cruelty against people with disabilities continues.

If you’ve traveled with someone who uses a wheelchair, you probably know how stressful it can be — especially if that wheelchair is damaged during the trip.

Reuters @reuters.com · 10d

USDOT will not enforce Biden wheelchair passenger protection rule reut.rs/4pMMWy0

USDOT will not enforce Biden wheelchair passenger protection rule

The U.S. Transportation Department said on Monday that it will not enforce key provisions of a Biden administration rule issued in December requiring new consumer protections for disabled passengers using wheelchairs.

reut.rs

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 8d

After picking up some medical supplies for Amelia, we took a quick detour out to Dune Peninsula because Malachite, the 4-year-old humpback whale, was reportedly hanging around. I managed a few shots with my iPhone attached to a pair of binoculars. 🐋

A collage of three photos showing Malachite, a humpback whale, swimming around Puget Sound.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 9d

I’m taking a PhotoShop course to earn a certificate and I’m spreading some Batten Disease awareness via the homework. I made a logo for a fake biotech in her name (I spelled out “Find a cure” in Morse code). The second was a fake magazine cover all about Batten Disease!

A fake magazine cover for a Batten Disease periodical with Amelia on the cover

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 10d

We love it! And the nearby Dune Peninsula is lovely as well!

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 10d

Our daughter was born with CLN1 Batten Disease and we know more than most that you never know how many summers you’ll have left. So this weekend, we continued our summer goal of visiting as many accessible parks and trails as possible by heading to Owen Beach in Tacoma.

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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 10d

There’s an episode of Friends where Rachel supposedly (off-screen) compares Jane Eyre to Robocop and I briefly thought of that as @timstevens.bsky.social here makes a much, more more apt comparison between Robocop and the Mustang GTD.

Tim Stevens @timstevens.bsky.social · 10d

There's a patriotic war brewing on a track that, traditionally, neither American manufacturers nor their enthusiasts have cared much about. It's the Nürburgring, and here's what it's like to drive the two greatest 'Merican weapons that have ever been deployed there. arstechnica.com/cars/2025/09...

ZR1, GTD, and America’s new Nürburgring war

Ford and Chevy set near-identical lap times with very different cars; we drove both.

arstechnica.com

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