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
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.
Reposted by Philip Palermo
EMERGENCY!
Today is the last day for us to save our housing for January! We still have one more day of sending out the memoir (digitally) before we're done. But we need to sell 14 more digital bundles at tessfowlerart.bigcartel.com by the end of the day so we can keep a roof over our head.
Today is the last day for us to save our housing for January! We still have one more day of sending out the memoir (digitally) before we're done. But we need to sell 14 more digital bundles at tessfowlerart.bigcartel.com by the end of the day so we can keep a roof over our head.
Tess Fowler Art
A collection of art by Tess Fowler. - High end art prints - Original art - Comic books
tessfowlerart.bigcartel.com
January 9, 2026 at 5:17 PM
EMERGENCY!
Today is the last day for us to save our housing for January! We still have one more day of sending out the memoir (digitally) before we're done. But we need to sell 14 more digital bundles at tessfowlerart.bigcartel.com by the end of the day so we can keep a roof over our head.
Today is the last day for us to save our housing for January! We still have one more day of sending out the memoir (digitally) before we're done. But we need to sell 14 more digital bundles at tessfowlerart.bigcartel.com by the end of the day so we can keep a roof over our head.
Amelia spent time in her wheelchair today. Still making progress and we’re starting to talk with docs about goals to return home, including increased BiPAP support. Not sure if that’ll be her “new normal,” but encouraged we’re even at this stage! Oh and we met Lucy, another therapy dog yesterday!
January 10, 2026 at 2:02 AM
Amelia spent time in her wheelchair today. Still making progress and we’re starting to talk with docs about goals to return home, including increased BiPAP support. Not sure if that’ll be her “new normal,” but encouraged we’re even at this stage! Oh and we met Lucy, another therapy dog yesterday!
“Cleaning the gutters can happen whenever. The time for this clever lede is right now.”
how many writers use writing to get out of chores or errands?
"I'm sorry, I can't help you do that thing I don't want to do, because I have to write."
"I'm sorry, I can't help you do that thing I don't want to do, because I have to write."
January 10, 2026 at 1:17 AM
“Cleaning the gutters can happen whenever. The time for this clever lede is right now.”
I know there’s a lot of awful news today, but I wanted to share that Amelia has been making more progress. She sat in Jenn’s lap for a bit! She’s on her home BiPAP machine and we’re trying to lower therapy frequency. Having some stomach issues, though. We also met the tiniest therapy dog, Gidget!
January 8, 2026 at 12:20 AM
I know there’s a lot of awful news today, but I wanted to share that Amelia has been making more progress. She sat in Jenn’s lap for a bit! She’s on her home BiPAP machine and we’re trying to lower therapy frequency. Having some stomach issues, though. We also met the tiniest therapy dog, Gidget!
Our amazing Amelia made some good progress today. She was able to transition to her at-home BiPAP and even spent some time off BiPAP support and with just supplemental oxygen via a nasal cannula. We hope she can keep her progress moving in the right direction so we can lower assistance even more.
January 6, 2026 at 8:42 AM
Our amazing Amelia made some good progress today. She was able to transition to her at-home BiPAP and even spent some time off BiPAP support and with just supplemental oxygen via a nasal cannula. We hope she can keep her progress moving in the right direction so we can lower assistance even more.
Tonies and an orange .
January 5, 2026 at 11:12 PM
Tonies and an orange .
With CES in full swing, I once again share my most useful piece of on-the-ground advice:
Sometimes the condiments for the boxed lunches are at the very bottom. Don’t make the mistake I did and settle for a dry sandwich.
Sometimes the condiments for the boxed lunches are at the very bottom. Don’t make the mistake I did and settle for a dry sandwich.
January 5, 2026 at 10:22 PM
With CES in full swing, I once again share my most useful piece of on-the-ground advice:
Sometimes the condiments for the boxed lunches are at the very bottom. Don’t make the mistake I did and settle for a dry sandwich.
Sometimes the condiments for the boxed lunches are at the very bottom. Don’t make the mistake I did and settle for a dry sandwich.
Reading this while sitting in a Pediatric ICU is extra infuriating.
BREAKING: The U.S. drops the number of vaccines it recommends for every child in an unprecedented overhaul of childhood health protections.
US drops the number of vaccines it recommends for every child
The U.S. took the unprecedented step Monday of dropping the number of vaccines it recommends for every child — leaving other immunizations, such as flu shots, open to families to choose but without clear guidance.
bit.ly
January 5, 2026 at 8:09 PM
Reading this while sitting in a Pediatric ICU is extra infuriating.
Amelia’s made good progress today! X-ray shows increased aeration, though the lower left lung base is still collapsed. We’re trying lower BiPAP settings to see if she can handle it. Thankful for visitors and everyone’s support!
January 5, 2026 at 7:58 AM
Amelia’s made good progress today! X-ray shows increased aeration, though the lower left lung base is still collapsed. We’re trying lower BiPAP settings to see if she can handle it. Thankful for visitors and everyone’s support!
If the Jaguars make the Super Bowl, I hope they hire Manny Jacinto for some fun marketing.
January 5, 2026 at 12:54 AM
If the Jaguars make the Super Bowl, I hope they hire Manny Jacinto for some fun marketing.
Reposted by Philip Palermo
We continue to make progress in developing an enzyme replacement therapy for a rare disease called Batten Disease CLN1. This work has been funded by NIH/NINDS. Demonstrating the importance of renewing the SBIR/STTR program.
January 2, 2026 at 6:44 PM
We continue to make progress in developing an enzyme replacement therapy for a rare disease called Batten Disease CLN1. This work has been funded by NIH/NINDS. Demonstrating the importance of renewing the SBIR/STTR program.
Go Amelia!
But also: Go Hawks!
But also: Go Hawks!
January 4, 2026 at 1:27 AM
Go Amelia!
But also: Go Hawks!
But also: Go Hawks!
Decent progress yesterday. But her docs clarified that they don’t think a breathing tube is worth the risk. They’d likely do it if we asked, but we’re placing most of our hope now in that she can recover enough to safely come off of full-time BiPAP support. Scary times, but we’re still hopeful.
January 3, 2026 at 7:45 PM
Decent progress yesterday. But her docs clarified that they don’t think a breathing tube is worth the risk. They’d likely do it if we asked, but we’re placing most of our hope now in that she can recover enough to safely come off of full-time BiPAP support. Scary times, but we’re still hopeful.
We’re so very thankful for those who are actively working on cures and/or therapies for Batten Disease, including the CLN1 type Amelia was born with.
We continue to make progress in developing an enzyme replacement therapy for a rare disease called Batten Disease CLN1. This work has been funded by NIH/NINDS. Demonstrating the importance of renewing the SBIR/STTR program.
January 2, 2026 at 10:44 PM
We’re so very thankful for those who are actively working on cures and/or therapies for Batten Disease, including the CLN1 type Amelia was born with.