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
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.
Reposted by Philip Palermo
It’s no guarantee but the first thing you should do if you see an outrageous story that’s just an image or screenshot or video with no link to a reputable source is to check the replies and see if someone is saying “that’s an AI fake.” And then don’t spread it either way because it’s not sourced.
January 2, 2026 at 7:40 PM
It’s no guarantee but the first thing you should do if you see an outrageous story that’s just an image or screenshot or video with no link to a reputable source is to check the replies and see if someone is saying “that’s an AI fake.” And then don’t spread it either way because it’s not sourced.
Amelia was calmer today, but her lungs may have closed again. Hoping chest PT helps. Docs spoke to us about possible intubation and breathing tube — and all the major risks involved. She came off of a ventilator 2 years ago. But her lungs are weaker now and there’s no guarantee she can do it again.
January 2, 2026 at 8:50 AM
Amelia was calmer today, but her lungs may have closed again. Hoping chest PT helps. Docs spoke to us about possible intubation and breathing tube — and all the major risks involved. She came off of a ventilator 2 years ago. But her lungs are weaker now and there’s no guarantee she can do it again.
Reposted by Philip Palermo
Just checked with the experts and the Space Needle has not disappeared. It really is still there.
Happy New Year!
(Yes. We said the same thing in 2024)
Happy New Year!
(Yes. We said the same thing in 2024)
January 1, 2026 at 8:13 AM
Just checked with the experts and the Space Needle has not disappeared. It really is still there.
Happy New Year!
(Yes. We said the same thing in 2024)
Happy New Year!
(Yes. We said the same thing in 2024)
Elsewhere in this hospital, it sounds like a baby was born at very close to 11:59PM on Dec. 31st.
January 1, 2026 at 8:03 AM
Elsewhere in this hospital, it sounds like a baby was born at very close to 11:59PM on Dec. 31st.
Amelia’s worked so hard today. Good: She’s gradually needed less oxygen support and may have reflated a partially collapsed lung. Not so good: All that effort, and all the “gunk” she’s coughed up has left her agitated and nauseated. Hoping she can calm down and prevent any progress backsliding.
January 1, 2026 at 6:46 AM
Amelia’s worked so hard today. Good: She’s gradually needed less oxygen support and may have reflated a partially collapsed lung. Not so good: All that effort, and all the “gunk” she’s coughed up has left her agitated and nauseated. Hoping she can calm down and prevent any progress backsliding.
We’re so thankful for the incredible support everyone has shown Amelia especially during her current hospital stay. To learn more about Batten Disease and groups that support affected families, consider visiting and even donating to the Batten Disease Support Research and Advocacy Foundation:
Batten Disease Support & Research Association
About Us
BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in...
bdsrafoundation.org
January 1, 2026 at 12:45 AM
We’re so thankful for the incredible support everyone has shown Amelia especially during her current hospital stay. To learn more about Batten Disease and groups that support affected families, consider visiting and even donating to the Batten Disease Support Research and Advocacy Foundation:
Kids with Batten Disease often have respiratory issues. We’ve worked so hard to keep Amelia out of the hospital, but last night, her breathing became very labored. She’s in the ICU on a strong BiPAP. She’s doing a bit better, and we hope she can avoid being intubated. We really hate Batten Disease.
December 30, 2025 at 11:43 PM
Kids with Batten Disease often have respiratory issues. We’ve worked so hard to keep Amelia out of the hospital, but last night, her breathing became very labored. She’s in the ICU on a strong BiPAP. She’s doing a bit better, and we hope she can avoid being intubated. We really hate Batten Disease.
I was wondering why my little post had been garnering so much attention and I think I figured out why!
Wrote about how disappointing it is that Jon Stewart punched down on people masking at @motherjones.com, when people should mind their own business and leave mask wearers be. www.motherjones.com/politics/202...
Hey Jon Stewart, jokes about wearing masks aren't funny
Critics of the Daily Show host say he's a hypocrite.
www.motherjones.com
December 30, 2025 at 11:35 PM
I was wondering why my little post had been garnering so much attention and I think I figured out why!
Disappointed to see Jon Stewart & co joke about masking in public. I do it for my medically fragile daughter (Batten Disease). People not masking properly led to her getting pneumonia, which led to her being on life support, which led to me getting price quotes on her cremation just in case.
December 29, 2025 at 3:31 AM
Disappointed to see Jon Stewart & co joke about masking in public. I do it for my medically fragile daughter (Batten Disease). People not masking properly led to her getting pneumonia, which led to her being on life support, which led to me getting price quotes on her cremation just in case.
Two years ago, dad passed away. So we met Amelia’s grandma and aunts at Tahoma National Cemetery to visit him today. His death set in motion the most chaotic and dire months of our lives, where Amelia got so sick and struggled on life support for weeks. It was such a blur of stress on many levels.
December 28, 2025 at 4:20 AM
Two years ago, dad passed away. So we met Amelia’s grandma and aunts at Tahoma National Cemetery to visit him today. His death set in motion the most chaotic and dire months of our lives, where Amelia got so sick and struggled on life support for weeks. It was such a blur of stress on many levels.
Man, the DOJ is everywhere these days.
December 28, 2025 at 1:22 AM
Man, the DOJ is everywhere these days.
The 04:35 mark in the One music video is exactly when I decided I wanted to play drums.
December 26, 2025 at 2:40 PM
The 04:35 mark in the One music video is exactly when I decided I wanted to play drums.
My 8-year-old has childhood dementia due to Batten Disease, and I’ve been extremely wary of AI being used to “bridge gaps” like this. A fraction of the funds used to develop these tools could’ve funded meaningful medical research instead.
The comments on this are all about how sweet it is and I feel insane. Using AI to make fake memories of your grandma with dementia and telling her they happened and then filming her reaction
December 26, 2025 at 8:15 AM
My 8-year-old has childhood dementia due to Batten Disease, and I’ve been extremely wary of AI being used to “bridge gaps” like this. A fraction of the funds used to develop these tools could’ve funded meaningful medical research instead.
Amelia was having a tough day (Batten Disease does not observe holidays, I guess), so we took her to check out some lights out at Yelm City Park. We hope all who celebrate are having a wonderful Christmas!
December 26, 2025 at 3:58 AM
Amelia was having a tough day (Batten Disease does not observe holidays, I guess), so we took her to check out some lights out at Yelm City Park. We hope all who celebrate are having a wonderful Christmas!
Can confirm. Last night, I brought a whole turkey, which sat alongside some prime rib, a ham, three different potato dishes — oh and a whole flippin’ lasagna I didn’t even get around to.
I have another really good friend who is from Manila and she said the Filipinos do Christmas like this too and I stg I am gonna go to her house one year to experience the majesty.
December 26, 2025 at 12:59 AM
Can confirm. Last night, I brought a whole turkey, which sat alongside some prime rib, a ham, three different potato dishes — oh and a whole flippin’ lasagna I didn’t even get around to.
Thanks to the folks liking my LinkedIn posts on today of all days. I see you and I appreciate you!
December 25, 2025 at 10:12 PM
Thanks to the folks liking my LinkedIn posts on today of all days. I see you and I appreciate you!
Reposted by Philip Palermo
Looking for a Christmas miracle for a kitty (aging parent situation) for Baltimore pals: (1/2)
""My mom can no longer keep Angelo (alas!!!) and we are looking to rehome him. Angelo is a total sweetheart. He is 6 years old, gentle, playful, friendly, and a lovebug."
""My mom can no longer keep Angelo (alas!!!) and we are looking to rehome him. Angelo is a total sweetheart. He is 6 years old, gentle, playful, friendly, and a lovebug."
December 25, 2025 at 2:07 PM
Looking for a Christmas miracle for a kitty (aging parent situation) for Baltimore pals: (1/2)
""My mom can no longer keep Angelo (alas!!!) and we are looking to rehome him. Angelo is a total sweetheart. He is 6 years old, gentle, playful, friendly, and a lovebug."
""My mom can no longer keep Angelo (alas!!!) and we are looking to rehome him. Angelo is a total sweetheart. He is 6 years old, gentle, playful, friendly, and a lovebug."
I would love to get Batten Disease research on @mcuban.bsky.social ‘s radar. Lack of awareness and funding are huge roadblocks preventing potentially life-saving research. Kids with my daughter’s type of Batten Disease usually don’t make it past age 10, so we’re still hopeful for a cure!
Mr Cuban,
I just wanted to quickly thank you. My husband has XXXX cancer, a rare gastrointestinal cancer. We are between insurance right now and when we went to pick it up we were informed it was $29,000. We were able to get it from CostPlus for $990. Thank you for saving my husband's life.
I just wanted to quickly thank you. My husband has XXXX cancer, a rare gastrointestinal cancer. We are between insurance right now and when we went to pick it up we were informed it was $29,000. We were able to get it from CostPlus for $990. Thank you for saving my husband's life.
December 25, 2025 at 5:24 AM
I would love to get Batten Disease research on @mcuban.bsky.social ‘s radar. Lack of awareness and funding are huge roadblocks preventing potentially life-saving research. Kids with my daughter’s type of Batten Disease usually don’t make it past age 10, so we’re still hopeful for a cure!
For Christmas, the Amazing Emma’s Exceptional Equipment Exchange gifted Amelia an adapted paint spinner with a push-button switch that lets her control the action!
December 24, 2025 at 11:15 PM
For Christmas, the Amazing Emma’s Exceptional Equipment Exchange gifted Amelia an adapted paint spinner with a push-button switch that lets her control the action!
I wonder if Avengers: Doomsday will have a “dad strength” joke at any point.
December 24, 2025 at 4:27 AM
I wonder if Avengers: Doomsday will have a “dad strength” joke at any point.
Is it possible this is all just an unorthodox marketing ploy to attract MORE attention to that news segment? Because…..
December 23, 2025 at 3:21 AM
Is it possible this is all just an unorthodox marketing ploy to attract MORE attention to that news segment? Because…..
Oh wow, they finally made a sequel to Troy, but I’m bummed they recast Sean Bean’s character.
(This is a joke, by the way.)
youtu.be/Mzw2ttJD2qQ
(This is a joke, by the way.)
youtu.be/Mzw2ttJD2qQ
The Odyssey | Official Trailer
YouTube video by Universal Pictures
youtu.be
December 22, 2025 at 11:14 PM
Oh wow, they finally made a sequel to Troy, but I’m bummed they recast Sean Bean’s character.
(This is a joke, by the way.)
youtu.be/Mzw2ttJD2qQ
(This is a joke, by the way.)
youtu.be/Mzw2ttJD2qQ
Anyone remember that episode of The Office where they find Michael’s screenplay and deduce he originally named a character after Dwight? He apparently changed his mind, tried to Find/Replace all instances of “Dwight,” but left a misspelled “Dwigt” behind. Been thinking about that a lot this weekend.
December 21, 2025 at 9:50 PM
Anyone remember that episode of The Office where they find Michael’s screenplay and deduce he originally named a character after Dwight? He apparently changed his mind, tried to Find/Replace all instances of “Dwight,” but left a misspelled “Dwigt” behind. Been thinking about that a lot this weekend.