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Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 34m

Tuesday turned out to be a great day to make our annual trip to the pumpkin patch. The weekday crowd is a little lighter, and the lines to take photos were a bit shorter! But it was still a wonderful time and we came home with 42 pounds of pumpkins. 🎃

Amelia poses for a photo at the Picha Farms Pumpkin Patch

Amelia poses with her parents for a photo at the Picha Farms Pumpkin Patch

Philip Palermo (Batten Disease is my scary name) @palermo.bsky.social · 36m

Tuesday turned out to be a great day to make our annual trip to the pumpkin patch. The weekday crowd is a little lighter, and the lines to take photos were a bit shorter! But it was still a wonderful time and we came home with 42 pounds of gourds. 🎃

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

Emily Mullin @emilymullin.bsky.social · 1d

WIRED reporter here. If you're a CDC worker and would like to share any information on the RIFs, feel free to message me at emullin.06 on Signal.

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

Aw, happy for you, Jake Moody.

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

Senator Patty Murray @murray.senate.gov · 1d

Sea-Tac Airport won't air Kristi Noem's miserable propaganda, and that's a good thing.

Donald Trump is not a king, and dog killer Kristi Noem can't just force our airports to break the law on her behalf.

Sea-Tac won’t air Noem video blaming shutdown on Democrats

Seattle-Tacoma International Airport won’t broadcast a video of Homeland Security Secretary Kristi Noem saying Democrats caused the federal government shutdown.

www.seattletimes.com

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

Time to celebrate with tacos!

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

The assault on children with disabilities continues.

USA TODAY @usatoday.com · 2d

The U.S. Department of Education fired nearly everyone in the Office of Special Education and Rehabilitative Services in a wave of new layoffs that began Friday, according to the union representing the agency's employees. bit.ly/3KMe3JJ

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

MLB (Bot) @mlbbot.bsky.social · 3d

FOR HUMPY! 😭

The Mariner Moose lifts Humpy the Salmon up in celebration after Humpy won the Salmon Run for the first time ever. Mariners fans can be seen going wild in the background.

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

My social feeds are basically:

Our democracy is in shambles, but my goodness what a baseball game that was!

Go, M’s!

❤️🔱⚾️

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

That game took so long, it’s now Leo Rivas’ 29th birthday.

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

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 · 6d

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 · 6d

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 · 6d

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 · 6d

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 · 6d

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 · 7d

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 · 6d

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 · 6d

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 · 7d

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 · 7d

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 · 7d

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

Reuters @reuters.com · 7d

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 · 8d

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 · 9d

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 · 9d

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 · 9d

I knew it sounded familiar.

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

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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