Philip Palermo
@palermo.bsky.social
Father of a child with CLN1 Batten Disease (searching for funding for research into first-ever cures)
Open to work. I used to make videos at TV Guide, GameSpot, Fandom, Cord Cutters News
GoFundMe for Amelia’s medical expenses: https://gofund.me/e02c7708
Open to work. I used to make videos at TV Guide, GameSpot, Fandom, Cord Cutters News
GoFundMe for Amelia’s medical expenses: https://gofund.me/e02c7708
You had me at “newspaper management sim.” Already having work flashbacks.
ok i can finally start FREAKING OUT OVER MY NEW OBSESSION
News Tower proves good journalism is no game
November 29, 2025 at 5:53 PM
You had me at “newspaper management sim.” Already having work flashbacks.
Not going to name names, but someone was feeling pretty crabby this morning. So we took a quick walk through the Naches Trail Preserve.
November 29, 2025 at 3:11 AM
Not going to name names, but someone was feeling pretty crabby this morning. So we took a quick walk through the Naches Trail Preserve.
If there’s a Thick ‘n Creamy option, call me immediately.
Kraft Original Mac & Cheese Mac Friday 65" Box, 65 Count of 7.5 oz Boxes goes up on Walmart exclusive in 60 minutes (9 PM PT - $19.37) buff.ly/zdUIMSg #ad
-65" TV-sized box
-65 boxes of Mac n Cheese
-4K Noodles
-65" TV-sized box
-65 boxes of Mac n Cheese
-4K Noodles
November 28, 2025 at 4:42 AM
If there’s a Thick ‘n Creamy option, call me immediately.
Happy Pushing the Limits of Food Safety Day to all who dare celebrate. 🤞🤞
November 28, 2025 at 1:43 AM
Happy Pushing the Limits of Food Safety Day to all who dare celebrate. 🤞🤞
lol, why am I looking at LinkedIn today?
November 27, 2025 at 10:25 PM
lol, why am I looking at LinkedIn today?
Reposted by Philip Palermo
If you’ve ever wanted to do something to support Amelia and other kids with rare diseases, here’s an excellent and easy way to do just that!
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
November 27, 2025 at 3:25 AM
If you’ve ever wanted to do something to support Amelia and other kids with rare diseases, here’s an excellent and easy way to do just that!
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
The House is scheduled to vote on the Give Kids a Chance Act next week.
You can urge your Rep to support it!
Photo via:
@everylifeorg.bsky.social
Anyone else just do the lowest-effort, most “whatever” meals possible the day before turkey day?
November 27, 2025 at 2:44 AM
Anyone else just do the lowest-effort, most “whatever” meals possible the day before turkey day?
Reposted by Philip Palermo
Still raising funds to save us before work kicks in next year. Still a lot on our plate. But we are fighting for it. Tess will likely never take commissions again, so my job is to make sure we get the back log out and everyone has access to digital versions of her work.
Guess who has two thumbs and has to raise 1k by the 28th And 3k by the 10th? Work will not begin again for me until next year so I have to try to save us while also handling shipping and re-lettering. We need help. Storage is at risk first. New sales incoming.
a man wearing a white shirt and tie smiles in front of a window
ALT: a man wearing a white shirt and tie smiles in front of a window
media.tenor.com
November 25, 2025 at 2:59 AM
Still raising funds to save us before work kicks in next year. Still a lot on our plate. But we are fighting for it. Tess will likely never take commissions again, so my job is to make sure we get the back log out and everyone has access to digital versions of her work.
Had a sneaking suspicion an “aspiring illustrator artist” account I saw on Threads was AI-generated after noticing the photos of themselves all started to have the same look and feel.
Sure enough, yesterday they posted another photo and forgot to crop out the Gemini logo in the corner.
Sure enough, yesterday they posted another photo and forgot to crop out the Gemini logo in the corner.
November 25, 2025 at 8:49 PM
Had a sneaking suspicion an “aspiring illustrator artist” account I saw on Threads was AI-generated after noticing the photos of themselves all started to have the same look and feel.
Sure enough, yesterday they posted another photo and forgot to crop out the Gemini logo in the corner.
Sure enough, yesterday they posted another photo and forgot to crop out the Gemini logo in the corner.
Different kind of outing on Saturday! We took Amelia around the Tacoma Art Museum and the Bridge of Glass in Tacoma. Bet she would’ve loved how warm the glass-blowing area usually is, but we stuck to the outdoor areas!
November 24, 2025 at 2:29 AM
Different kind of outing on Saturday! We took Amelia around the Tacoma Art Museum and the Bridge of Glass in Tacoma. Bet she would’ve loved how warm the glass-blowing area usually is, but we stuck to the outdoor areas!
I downloaded the Charlie Brown Christmas soundtrack onto my phone last year and just never got around to taking it off.
And now I’ve put it off long enough that it’s back in season.
🎄
And now I’ve put it off long enough that it’s back in season.
🎄
November 23, 2025 at 6:35 AM
I downloaded the Charlie Brown Christmas soundtrack onto my phone last year and just never got around to taking it off.
And now I’ve put it off long enough that it’s back in season.
🎄
And now I’ve put it off long enough that it’s back in season.
🎄
Latest freelance work from me: It’s an update of the Best iPad Keyboard Cases review for @nytwirecutter.bsky.social. Had a lot of fun testing keyboard cases on desks, on armrests, outdoors, in the back of wheelchair conversion vans, etc. Hoping this leads to more freelance work in the future! 🤞
The Best iPad Keyboard Cases
Apple’s 10th- and 11th-generation iPads aren’t compatible with previous cases, so if you’re upgrading, you need a new accessory.
www.nytimes.com
November 20, 2025 at 11:33 PM
Latest freelance work from me: It’s an update of the Best iPad Keyboard Cases review for @nytwirecutter.bsky.social. Had a lot of fun testing keyboard cases on desks, on armrests, outdoors, in the back of wheelchair conversion vans, etc. Hoping this leads to more freelance work in the future! 🤞
It’s been a long while since we visited the Billy Frank Jr. Nisqually National Wildlife Refuge, and we weren’t 100% how accessible it would be for Amelia’s wheelchair. But we had a lovely time on the boardwalk loop and got just a little distracted by all the tiny mushrooms popping up.
November 19, 2025 at 10:41 PM
It’s been a long while since we visited the Billy Frank Jr. Nisqually National Wildlife Refuge, and we weren’t 100% how accessible it would be for Amelia’s wheelchair. But we had a lovely time on the boardwalk loop and got just a little distracted by all the tiny mushrooms popping up.
Cautiously optimistic considering all the vets involved, but we shall see! I adore this franchise, so I hope it turns out well, and hopefully we get to see some familiar faces here and there.
Amazon Greenlights A New Stargate Series
www.gateworld.net/news/2025/11...
FIRST ON GATEWORLD: A new #Stargate series is now in pre-production for Prime Video, with veteran writer and producer Martin Gero at the helm. @primevideo.bsky.social
www.gateworld.net/news/2025/11...
FIRST ON GATEWORLD: A new #Stargate series is now in pre-production for Prime Video, with veteran writer and producer Martin Gero at the helm. @primevideo.bsky.social
Amazon Greenlights A New Stargate Series » GateWorld
FIRST ON GATEWORLD: A new Stargate series is now in pre-production for Prime Video, with veteran writer and producer Martin Gero at the helm.
www.gateworld.net
November 19, 2025 at 9:52 PM
Cautiously optimistic considering all the vets involved, but we shall see! I adore this franchise, so I hope it turns out well, and hopefully we get to see some familiar faces here and there.
Reposted by Philip Palermo
Glad to see some genuinely encouraging and exciting news and I’m looking forward to seeing how this can benefit the Batten Disease community! Huge kudos to @kennedykrieger.bsky.social and everyone involved!
Kennedy Krieger Institute Awarded $8.17 Million Grant to Lead National Research Consortium
National alliance will accelerate treatment development for children with batten diseases.
www.kennedykrieger.org
November 19, 2025 at 5:32 AM
Glad to see some genuinely encouraging and exciting news and I’m looking forward to seeing how this can benefit the Batten Disease community! Huge kudos to @kennedykrieger.bsky.social and everyone involved!
Oh also, shout out to the amazing Batten Disease Support, Research, and Advocacy Foundation (BDSRA)!
Glad to see some genuinely encouraging and exciting news and I’m looking forward to seeing how this can benefit the Batten Disease community! Huge kudos to @kennedykrieger.bsky.social and everyone involved!
Kennedy Krieger Institute Awarded $8.17 Million Grant to Lead National Research Consortium
National alliance will accelerate treatment development for children with batten diseases.
www.kennedykrieger.org
November 19, 2025 at 5:39 AM
Oh also, shout out to the amazing Batten Disease Support, Research, and Advocacy Foundation (BDSRA)!
Glad to see some genuinely encouraging and exciting news and I’m looking forward to seeing how this can benefit the Batten Disease community! Huge kudos to @kennedykrieger.bsky.social and everyone involved!
Kennedy Krieger Institute Awarded $8.17 Million Grant to Lead National Research Consortium
National alliance will accelerate treatment development for children with batten diseases.
www.kennedykrieger.org
November 19, 2025 at 5:32 AM
Glad to see some genuinely encouraging and exciting news and I’m looking forward to seeing how this can benefit the Batten Disease community! Huge kudos to @kennedykrieger.bsky.social and everyone involved!
It’s hard to describe how much or how often I feel like a failure for not doing enough, for not advocating enough, for not spreading Batten Disease awareness fast enough. Our amazing Amelia deserves so much more than I’m able to provide, and I think about that constantly.
If you're the parent of a disabled kid, I just want to tell you I know it's hard and I know you feel like you're failing constantly, but you're doing it and you're doing the best you can and your kid absolutely loves you for it.
November 18, 2025 at 2:10 PM
It’s hard to describe how much or how often I feel like a failure for not doing enough, for not advocating enough, for not spreading Batten Disease awareness fast enough. Our amazing Amelia deserves so much more than I’m able to provide, and I think about that constantly.
We’ve seen firsthand what disrupting clinical trials can do. Amelia was eligible for a trial that stalled a few years ago. Now, her Batten Disease has likely progressed too far for her to be a first-wave candidate.
To see these cuts on such a widespread scale is to witness unconscionable cruelty.
To see these cuts on such a widespread scale is to witness unconscionable cruelty.
Between the end of February and mid-August, funding ceased for 383 studies that were testing treatments for conditions including cancer, heart disease and brain disease. https://to.pbs.org/47KbPDE
NIH cuts affected over 74,000 patients enrolled in experiments, report finds
Between the end of February and mid-August, funding lapsed for 383 studies that were testing treatments for conditions like cancer, heart disease and brain disease.
www.pbs.org
November 18, 2025 at 1:39 AM
We’ve seen firsthand what disrupting clinical trials can do. Amelia was eligible for a trial that stalled a few years ago. Now, her Batten Disease has likely progressed too far for her to be a first-wave candidate.
To see these cuts on such a widespread scale is to witness unconscionable cruelty.
To see these cuts on such a widespread scale is to witness unconscionable cruelty.
Reposted by Philip Palermo
Between the end of February and mid-August, funding ceased for 383 studies that were testing treatments for conditions including cancer, heart disease and brain disease. https://to.pbs.org/47KbPDE
NIH cuts affected over 74,000 patients enrolled in experiments, report finds
Between the end of February and mid-August, funding lapsed for 383 studies that were testing treatments for conditions like cancer, heart disease and brain disease.
www.pbs.org
November 17, 2025 at 10:31 PM
Between the end of February and mid-August, funding ceased for 383 studies that were testing treatments for conditions including cancer, heart disease and brain disease. https://to.pbs.org/47KbPDE
“Don’t underestimate the impact of your advocacy, even on the days when it feels like you’re shouting into the void.“
Cristina Vargas on Batten parents sharing their stories.
I feel like I’m shouting into the void A LOT. It’s disheartening, and frustrating. But it’s still vital.
Cristina Vargas on Batten parents sharing their stories.
I feel like I’m shouting into the void A LOT. It’s disheartening, and frustrating. But it’s still vital.
How Batten disease parents can drive change through advocacy
Columnist Cristina Vargas explains how speaking up and sharing your child's story can drive change in the rare disease community.
battendiseasenews.com
November 17, 2025 at 2:50 AM
“Don’t underestimate the impact of your advocacy, even on the days when it feels like you’re shouting into the void.“
Cristina Vargas on Batten parents sharing their stories.
I feel like I’m shouting into the void A LOT. It’s disheartening, and frustrating. But it’s still vital.
Cristina Vargas on Batten parents sharing their stories.
I feel like I’m shouting into the void A LOT. It’s disheartening, and frustrating. But it’s still vital.
Well that turned into an interesting game real fast.
November 17, 2025 at 12:11 AM
Well that turned into an interesting game real fast.
Very useful knowledge and insights in this thread, even for the most well-intentioned parents of children with disabilities.
Some abled parents of disabled people are the most violent ableists. They use their children as tools to demonstrate their heroism in shouldering the burden of taking care of a disabled person, think they’re incapable of ableism, and say the experience of a caretaker is the same as being disabled.
November 16, 2025 at 5:00 AM
Very useful knowledge and insights in this thread, even for the most well-intentioned parents of children with disabilities.
Amelia’s feeling better after a rough, uneven week, so we explored Kubota Garden in the Rainier Beach area of Seattle. Even on a misty, drizzly day, it’s clear this is a lovely place to get lost in. Can’t wait to return on a sunnier day!
November 16, 2025 at 4:27 AM
Amelia’s feeling better after a rough, uneven week, so we explored Kubota Garden in the Rainier Beach area of Seattle. Even on a misty, drizzly day, it’s clear this is a lovely place to get lost in. Can’t wait to return on a sunnier day!