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
Amelia’s ability to recover is like writing in pencil. The more it’s used, the shorter it gets. Her new BiPAP settings put too much pressure on her stomach, which fills with gas, which squeezes her lungs, which leads to higher BiPAP settings, and on and on.
We may not have any “pencil” left.
We may not have any “pencil” left.
February 7, 2026 at 6:24 PM
Amelia’s ability to recover is like writing in pencil. The more it’s used, the shorter it gets. Her new BiPAP settings put too much pressure on her stomach, which fills with gas, which squeezes her lungs, which leads to higher BiPAP settings, and on and on.
We may not have any “pencil” left.
We may not have any “pencil” left.
Back in the hospital. Amelia was having a lot of trouble going to the bathroom. Not sure if her new BiPAP settings are causing too much pressure. Also tracking down a possible infection.
Batten disease still sucks, but we’re thankful for the Mary Bridge Children’s Hospital staff!
Batten disease still sucks, but we’re thankful for the Mary Bridge Children’s Hospital staff!
February 6, 2026 at 4:56 AM
Back in the hospital. Amelia was having a lot of trouble going to the bathroom. Not sure if her new BiPAP settings are causing too much pressure. Also tracking down a possible infection.
Batten disease still sucks, but we’re thankful for the Mary Bridge Children’s Hospital staff!
Batten disease still sucks, but we’re thankful for the Mary Bridge Children’s Hospital staff!
Posting this while Amelia is back in the hospital: February 28th is Rare Disease Month and my wife Jennifer has organized another fundraiser to support the Batten Disease Support Research and Advocacy Foundation!
If you don’t have dinner plans on Feb. 27th (the day before), we’d love the support!
If you don’t have dinner plans on Feb. 27th (the day before), we’d love the support!
February 6, 2026 at 1:08 AM
Posting this while Amelia is back in the hospital: February 28th is Rare Disease Month and my wife Jennifer has organized another fundraiser to support the Batten Disease Support Research and Advocacy Foundation!
If you don’t have dinner plans on Feb. 27th (the day before), we’d love the support!
If you don’t have dinner plans on Feb. 27th (the day before), we’d love the support!
Back again — hoping our girl recovers swiftly.
Batten disease still sucks.
Batten disease still sucks.
February 5, 2026 at 2:01 PM
Back again — hoping our girl recovers swiftly.
Batten disease still sucks.
Batten disease still sucks.
I would fund as many rare disease research efforts as possible — including all the Batten Disease programs.
Our daughter WAS eligible for a possibly life-saving clinical trial until it was “deprioritized” due to funding issues and I don’t want others to experience that heartbreak.
Our daughter WAS eligible for a possibly life-saving clinical trial until it was “deprioritized” due to funding issues and I don’t want others to experience that heartbreak.
Pop Quiz:
You've got Elon's money. What's the first thing you buy that makes you happy?
For me it's, "pay every single campaign on GoFundMe." There's only been $30bil raised by GFM its entire existence, I could drop $30bil like it was *nothing*, do immeasurable good, and be instantly beloved.
You've got Elon's money. What's the first thing you buy that makes you happy?
For me it's, "pay every single campaign on GoFundMe." There's only been $30bil raised by GFM its entire existence, I could drop $30bil like it was *nothing*, do immeasurable good, and be instantly beloved.
Elon COULD be happy
He'd need to learn an art, make amends to his children, give to the poor, make friends, love a movie, play a video game, literally do anything but be Elon Musk - the one thing he cannot do
That money could buy anyone happiness except for him
He'd need to learn an art, make amends to his children, give to the poor, make friends, love a movie, play a video game, literally do anything but be Elon Musk - the one thing he cannot do
That money could buy anyone happiness except for him
February 5, 2026 at 7:50 AM
I would fund as many rare disease research efforts as possible — including all the Batten Disease programs.
Our daughter WAS eligible for a possibly life-saving clinical trial until it was “deprioritized” due to funding issues and I don’t want others to experience that heartbreak.
Our daughter WAS eligible for a possibly life-saving clinical trial until it was “deprioritized” due to funding issues and I don’t want others to experience that heartbreak.
Reposted by Philip Palermo
⏰ The countdown continues…ONE MONTH until #RareDiseaseDay!
How are you going to #LightUpForRare of #ShareYourColours? We want to know!
🌍 Explore toolkits & events to get involved: https://go.rarediseaseday.org/RDD
#RareDiseaseCommunity
How are you going to #LightUpForRare of #ShareYourColours? We want to know!
🌍 Explore toolkits & events to get involved: https://go.rarediseaseday.org/RDD
#RareDiseaseCommunity
January 28, 2026 at 1:00 PM
⏰ The countdown continues…ONE MONTH until #RareDiseaseDay!
How are you going to #LightUpForRare of #ShareYourColours? We want to know!
🌍 Explore toolkits & events to get involved: https://go.rarediseaseday.org/RDD
#RareDiseaseCommunity
How are you going to #LightUpForRare of #ShareYourColours? We want to know!
🌍 Explore toolkits & events to get involved: https://go.rarediseaseday.org/RDD
#RareDiseaseCommunity
It’s wild to me that this version exists, but I’m glad it does.
Ride The Lightning (Bonus Track)
YouTube video by Megadeth - Topic
youtu.be
January 29, 2026 at 7:25 PM
It’s wild to me that this version exists, but I’m glad it does.
Took Amelia on another outing yesterday afternoon. She was in a much better mood than our last trip! Her grandma got to join us for a quick stroll along the Bud Blancher Trail. We also spotted a bunch of bald eagles along the river and took a group photo with one.
January 29, 2026 at 4:57 AM
Took Amelia on another outing yesterday afternoon. She was in a much better mood than our last trip! Her grandma got to join us for a quick stroll along the Bud Blancher Trail. We also spotted a bunch of bald eagles along the river and took a group photo with one.
A bit of promising news: I’m highlighting recent milestones @collabchem.bsky.social has achieved in developing an enzyme replacement therapy for CLN1 Batten Disease, the type Amelia was born with. Funding remains a huge concern, but I want to celebrate these advancements as often as I can!
Collaborations Pharmaceuticals, Inc. demonstrates a treatment for CLN1 Batten disease crosses the blood-brain-barrier — Collaborations
rhPPT1 is a recombinant protein used to treat an ultra-rare disease called Batten disease CLN1 for which there is currently no FDA approved treatment available. RALEIGH, NC, UNITED STATES, January ...
collaborations.com
January 28, 2026 at 7:02 PM
A bit of promising news: I’m highlighting recent milestones @collabchem.bsky.social has achieved in developing an enzyme replacement therapy for CLN1 Batten Disease, the type Amelia was born with. Funding remains a huge concern, but I want to celebrate these advancements as often as I can!
Reposted by Philip Palermo
A few awesome NFL writers and podcasters (please add more in the replies)
@jourdanrodrigue.bsky.social
@carmiev.bsky.social
@kfitz134.bsky.social
@agetzenberg.bsky.social
@maggiejloney.bsky.social
@perrigoldstein.bsky.social
@jourdanrodrigue.bsky.social
@carmiev.bsky.social
@kfitz134.bsky.social
@agetzenberg.bsky.social
@maggiejloney.bsky.social
@perrigoldstein.bsky.social
I would love a starter pack for female sports writers. I have only found a few here who actually post regularly.
January 25, 2026 at 5:21 PM
A few awesome NFL writers and podcasters (please add more in the replies)
@jourdanrodrigue.bsky.social
@carmiev.bsky.social
@kfitz134.bsky.social
@agetzenberg.bsky.social
@maggiejloney.bsky.social
@perrigoldstein.bsky.social
@jourdanrodrigue.bsky.social
@carmiev.bsky.social
@kfitz134.bsky.social
@agetzenberg.bsky.social
@maggiejloney.bsky.social
@perrigoldstein.bsky.social
Been retired for half a decade, but Kam Chancellor still looks like someone I would absolutely not wanted to get hit by.
January 26, 2026 at 3:03 AM
Been retired for half a decade, but Kam Chancellor still looks like someone I would absolutely not wanted to get hit by.
Amelia is still on 20+ hours of BiPAP per day, but we’re trying to test her lungs a bit with about an hour a day with just a nasal cannula supplying some oxygen.
Also: Go Hawks.
Also: Go Hawks.
January 25, 2026 at 11:42 PM
Amelia is still on 20+ hours of BiPAP per day, but we’re trying to test her lungs a bit with about an hour a day with just a nasal cannula supplying some oxygen.
Also: Go Hawks.
Also: Go Hawks.
Again, I know there’s so much awful stuff going on right now. But I still want to celebrate our Amelia. We’ve been slowly venturing outdoors again while still sticking to her 20+ hours of BiPAP lung support. Despite a lot of anger during the drive, she enjoyed the actual walk around Dune Peninsula!
January 25, 2026 at 4:02 AM
Again, I know there’s so much awful stuff going on right now. But I still want to celebrate our Amelia. We’ve been slowly venturing outdoors again while still sticking to her 20+ hours of BiPAP lung support. Despite a lot of anger during the drive, she enjoyed the actual walk around Dune Peninsula!
Is Copilot confusing Blitz, the Seahawks mascot with NFL Blitz, the video game?
January 18, 2026 at 4:59 AM
Is Copilot confusing Blitz, the Seahawks mascot with NFL Blitz, the video game?
Reposted by Philip Palermo
More like Ken Runner
January 18, 2026 at 2:46 AM
More like Ken Runner
January 18, 2026 at 1:55 AM
Time to check in on @erinbiba.bsky.social before I focus on the Seahawks game.
January 18, 2026 at 12:46 AM
Time to check in on @erinbiba.bsky.social before I focus on the Seahawks game.
“Oh, Amelia’s BiPAP machine is alarming because her respiratory rate is high, but she’s just having another seizure,” I casually said to Jenn as I went about adding almond milk to my decaf coffee.
Batten Disease really alters the content and tone of our average conversations.
Batten Disease really alters the content and tone of our average conversations.
January 16, 2026 at 4:52 AM
“Oh, Amelia’s BiPAP machine is alarming because her respiratory rate is high, but she’s just having another seizure,” I casually said to Jenn as I went about adding almond milk to my decaf coffee.
Batten Disease really alters the content and tone of our average conversations.
Batten Disease really alters the content and tone of our average conversations.
5AM and just troubleshooting some loud BiPAP alarms on Amelia’s new ventilator. I think I’ve made some progress and I’m thankful she’s comfortably sleeping through these LOUD alerts!
Oh and Batten Disease sucks!
Oh and Batten Disease sucks!
January 15, 2026 at 1:20 PM
5AM and just troubleshooting some loud BiPAP alarms on Amelia’s new ventilator. I think I’ve made some progress and I’m thankful she’s comfortably sleeping through these LOUD alerts!
Oh and Batten Disease sucks!
Oh and Batten Disease sucks!
Finally home. Lots to say soon, but for now: We’re thankful to return home with Amelia. As always, we’re grateful to the amazing Mary Bridge Children’s Hospital staff and to all of Amelia’s supporters! We appreciate you all!
And yes our Christmas tree is still up. Haven’t been home all year!
And yes our Christmas tree is still up. Haven’t been home all year!
January 14, 2026 at 4:10 AM
Finally home. Lots to say soon, but for now: We’re thankful to return home with Amelia. As always, we’re grateful to the amazing Mary Bridge Children’s Hospital staff and to all of Amelia’s supporters! We appreciate you all!
And yes our Christmas tree is still up. Haven’t been home all year!
And yes our Christmas tree is still up. Haven’t been home all year!
The longer I stay at a hospital, the more I want to fire up Theme Hospital, or its modern day equivalent, Two Point Hospital.
January 13, 2026 at 10:26 AM
The longer I stay at a hospital, the more I want to fire up Theme Hospital, or its modern day equivalent, Two Point Hospital.
Amelia’s had a good couple days followed by really rough, uncomfortable nights with possible stomach discomfort. Trying ways to ease pressure while ensuring she gets the BiPAP support she needs. Not sure what her new “normal” might be, but we’ll do our best to adjust!
January 12, 2026 at 2:25 AM
Amelia’s had a good couple days followed by really rough, uncomfortable nights with possible stomach discomfort. Trying ways to ease pressure while ensuring she gets the BiPAP support she needs. Not sure what her new “normal” might be, but we’ll do our best to adjust!
Do you see that dark blue section? The one labeled “No Treatment”? That’s where our Amelia is with her fatal CLN1 Batten Disease. We’ve seen firsthand how promising research can be sidelined by funding issues, so we’re thankful for any effort to raise awareness about these rare diseases.
30 million people are living with a rare disease in the United States, according to the National Organization of Rare Disorders.
That’s why we’re launching CNBC Cures, a new initiative to help raise awareness of rare diseases and improve patient outcomes.
Read more: cnb.cx/4pqqmK7
That’s why we’re launching CNBC Cures, a new initiative to help raise awareness of rare diseases and improve patient outcomes.
Read more: cnb.cx/4pqqmK7
January 10, 2026 at 9:55 PM
Do you see that dark blue section? The one labeled “No Treatment”? That’s where our Amelia is with her fatal CLN1 Batten Disease. We’ve seen firsthand how promising research can be sidelined by funding issues, so we’re thankful for any effort to raise awareness about these rare diseases.