I clearly have deadlines coming up because I had dreams about being way behind in a college class I forgot I signed up for.
Philip Palermo
@palermo.bsky.social
Father of a child with CLN1 Batten Disease (searching for funding for research into first-ever cures) Freelance writer/editor/video editor. I used to make videos at TV Guide, GameSpot, Fandom, Cord Cutters News
Jenn and I spent Saturday in Seattle checking out Christopher Marley’s Exquisite Creatures exhibit (filled with beautiful art and fascinating animals). Then we joined her sister’s family for a tour of the Freedom Plane documents exhibit at the Museum of History and Industry on Lake Union.
Hi everyone, today me and 22 others at Double Fine were hit by layoffs today. All the people who lost their jobs today care so much about the games they make and the people they work with. If anyone is looking for a tools SE with 7 years of experience and who brings baked goods on Mondays lmk.
Backyard macro shots. That second one is a butterfly wing, by the way. (📸: iPhone 16 Pro with lens attachment)
I’ve said this before, but I love when I can tell who wrote a story from the headline alone. CC: @rjcc.bsky.social www.theverge.com/entertainmen...
Xbox gamer Strive4G8ness23 signs a two-year, $8 million deal with the 76ers.
How could anyone have known that LeBron James would choose Philadelphia as his next NBA team? Well, there were signs. [Image: https://platform.theverge.com/wp-content/uploads/sites/2/2026/07/lebron-ph...
theverge.com
If I could direct more of my taxes to rare disease research this way, I absolutely would.
sirosenbaum.bsky.social@sirosenbaum.bsky.social · 2w agoWhen you file taxes, there should be a page where you check off the things you’d most like your taxes to be spent on and it lists all the things you get bc people pay taxes
For music (and shows and movies) I know I’ll enjoy for years to come, I typically buy physical media once instead of paying steamers to rent access month-to-month.
The Verge@theverge.com · 3w ago16.3 million CDs were sold in the first half of 2026 in the US, a 16 percent increase year-over-year.
I genuinely appreciate any professional opportunity I get to write about Amelia and spread Batten Disease awareness. But my goodness, crying into my laptop is exhausting.
Not sure if this counts, but: We have rocks! My wife started a rock-painting account to relieve stress and help promote Batten Disease awareness. We lost our 8-year-old daughter to this fatal rare disease in Feb. and we’re still dropping rocks in her honor. FB/IG: AmeliaPalermoRocks
Mika McKinnon@mikamckinnon.bsky.social · 3w agoIt’s Rock Day: Rock Check! Do you have your rock? Do you need a rock? Can you find a rock? I found this lovely porphyritic basalt in my washing machine. I love how the different crystal sizes tell a story of an eruption rudely interrupting cozy subterranean cooling. Photos & stories welcome.
Good morning. Today is the LAST DAY to comment on the proposed OMB rule that will, honestly, destroy science in the US. And it will do FAR MORE THAN THAT. www.theverge.com/science/9576...
The war against ‘woke’ could end US science as we know it
‘Everyone will be affected, not just scientists. Every community in the country.’
theverge.com
There is still time to submit your comment and tell the government that you don't want US research to be completely destroyed by politicians meddling in individual grants. You can submit your comments here: www.regulations.gov/commenton/OM...
Rebecca Solnit@rebeccasolnit.bsky.social · 4w agoComments due by Monday on the attempt to politicize science/aka kill American research as we know it. Do it at the link (counter the ton of Heritage-foudnatoin-prompted comments): www.regulations.gov/document/OMB...
Amelia’s beach wheelchair enabled us to take her on so many adventures. Now, the amazing Emma’s Exceptional Equipment Exchange has started offering her chair as a loaner for other kids to go on their own adventures. They kindly added a sign to the back of the chair in honor of our girl. 🦋
Ryker was diagnosed with CLN1 (the same type of Batten Disease our Amelia was born with). Shout out to the Pfingsten family for continuing to celebrate him!
10/11 News@1011now.com · last mo.South Lincoln community hosts celebration of life, Make-A-Wish fundraiser two years after boy dies from Batten disease
Today is my last day at Scientific American, which has been sold to LabX media group. For three decades I've led the magazine's coverage of human origins, archaeology, paleontology, animal behavior, ecology, BIRDS. End of an era. Anyway this feels weird to say, but I'm now available for assignments!
First Father’s Day without you, Amelia. I hope you know how much I loved being your dad and how much I love and miss you. Left: 2017. Our first Father’s Day. Right: 2026. I’m holding some of her ashes. Please consider supporting Batten Disease research: web.charityengine.net/Main-Donatio...
Happy Father’s Day, dad. I hope you and Amelia are having just the best time playing together in Heaven.
Update: "We incorrectly stated that PlayStation Plus is required for local co-op splitscreen play. Local splitscreen co-op requires a PlayStation account for each player but does not require a PlayStation Plus account."
Wario64@wario64.bsky.social · 2mo agoHalo: Campaign Evolved split screen on PS5: "both accounts will need to have PlayStation Plus and be linked to a Microsoft account. Having these active PlayStation Plus subscriptions will also provide access to online co-op play." www.halowaypoint.com/news/june-co...
Getting more and more anxious and sad as Father’s Day approaches. Good times. 😒
The very, very, very few times I’ve actually used my PS5 all year have been for local co-op games. (Grief manifests in interesting ways, like not wanting to play single-player games.) I was looking forward to this, but not anymore.
Wario64@wario64.bsky.social · 2mo agoHalo: Campaign Evolved split screen on PS5: "both accounts will need to have PlayStation Plus and be linked to a Microsoft account. Having these active PlayStation Plus subscriptions will also provide access to online co-op play." www.halowaypoint.com/news/june-co...
A gene therapy for Huntington’s disease has a new path toward approval from the Food and Drug Administration after the exit of several Trump officials, particularly Vinay Prasad.
"Truly evil" FDA rejection of gene therapy overturned after Trump official ousted
Gene therapy company UniQure had another FDA meeting after Vinay Prasad's exit.
arstechnica.com
From where I’m sitting, I can hear a piano bar playing Empire State of Mind.
We said goodbye to Amelia’s wheelchair van this week. Sad to see it go, but hopeful it can help another family now. It made a huge positive impact in Amelia’s quality of life and hopefully its next family takes it on even more adventures. We then visited some of the nearby waterfront views.
We went to Northwest Trek for International Batten Disease Awareness Day. I used the lens attachment on my phone. I bought it when Amelia was in the hospital. I held it in her hand and told her we’d use it on all the adventures she still had ahead of her. I miss her so much.
For International Batten Disease Awareness Day (June 9), I'm highlighting Batten Disease mentions in media. First, Netflix's The Saint of Second Chances. This doc follows famed baseball promoter Mike Veeck, whose daughter was born with Batten Disease. It's fascinating and heartbreaking.
Each year, for International Batten Disease Awareness Day, my wife and I produce a video to honor those diagnosed with the CLN1 variant, including our Amelia. It’s a chance to remember and celebrate some amazing people! youtu.be/3SCG2-gnwok
The Faces of CLN1 Batten Disease — 2026 | International Batten Disease Awareness Day #battendisease
YouTube video by For Amelia Palermo (Batten Disease Awareness)
youtu.be
Today is International Batten Disease Awareness Day and it’s our first without our Amelia. I’ll be posting a lot today! First off, huge thank you to my friends at @tvguide.com for letting me update my rundown of Batten Disease representation in movies, shows, and other media.
The Best Movies and Shows to Watch for International Batten Disease Awareness Day
Featuring Love, Kennedy and Chicago Med
tvguide.com
Seven years ago today, Amelia was diagnosed with CLN1 Batten Disease. We made it our mission to cherish every second we had with her. She deserved so much more and the sooner there are cures for Batten Disease, the better. This was taken a few days after her diagnosis and I miss that smile so much.
