Philip Palermo

Thanks!

A cropped graphic from the BDSRA calling on supporters to vote before Feb. 18 in Project for Awesome 2026

Voting closes on Feb. 18th, so there’s still time to vote for the Batten Disease Support Research and Advocacy Foundation and help keep Amelia’s fight going!

projectforawesome.com/videos/proje...

And as he mentions in the post, please consider voting for the Batten Disease Support Research and Advocacy Foundation by Feb. 18th at: projectforawesome.com/videos/proje...

A screenshot from Josh Gondelman’s That’s Marvelous newsletter that says: I obviously don't have a ton of chipper things to say in response to the saddest news anyone can give or receive. I do know that this family worked so hard to give Amelia and other kids with CLN1 Batten Disease the best possible life. In fact, they are currently involved in a fundraising effort they asked me to share here. The impulse to allow your grief to guide you towards even more openness and generosity is so moving to witness. I hope that as you're working so hard to take care of others and create a better future, you're allowing yourselves to be cared for as well. It sounds like you were as materially prepared for Amelia's death as you could be, but even so, you deserve the kind of compassion for yourselves and each other that you are giving to the wider world.

A screenshot from Josh Gondelman’s That’s Marvelous newsletter that says: On Friday night I got to hear my friend Claudia read an extremely beautiful remembrance of someone she lost a couple of years ago. She wrote so vividly about how grief isn't the end of love, both for the person who is gone and for the other people in your life. Between Claudia's story and this message and seeing Ms. Rachel's work with the PCRF up close, my week has been full of reminders that the world is full of often-arbitrary cruelty and pain, and that the only way to combat that facet of reality is through care and community. I hope that you have plenty of both around you right now and into the future. May Amelia's memory be a blessing.

In case it was up for debate, @joshgondelman.bsky.social is a kind and generous human being and I’m thankful for his kind words and support. Please consider subscribing to his lovely newsletter, That’s Marvelous at: www.thatsmarvelousnewsletter.com

A screenshot of Project for Awesome’s funds raised for 2026, surpassing $4 million.

Project for Awesome supporters have raised over $4 million this year. And I’d love for the BDSRA to receive some of those funds! Please vote before Wednesday, 2/18!

Vote here: projectforawesome.com/videos/proje...

A pair of beautiful stuffed animals made from several of Amelia’s clothes.

Amelia in a hospital bed holding her two new stuffed animals

A visual breakdown of the clothes used to create two stuffed animals for Amelia

Just before Amelia passed, we received a wonderful gift from our high school friend Tara. A while back, we sent her some of Amelia’s clothes to be made into these beautiful stuffed animals and we’re so grateful Amelia had a chance to hold them.

Direct donations to the BDSRA would be a huge help! They’ve helped us so much over the years, and we’d appreciate any support anyone can send their way!

BDSRA BDSRA Foundation | Powered by CharityEngine

You can also donate directly to Batten Disease research here

web.charityengine.net/Main-Donatio...

Thank you so much!

Please consider sharing the post below. Feeling especially powerless and helpless this week, but this is one concrete way to still support Amelia.

A modified screenshot from BDSRA calling on people to vote for the group during Project for Awesome 2026

One amazing way to keep Amelia’s fight against Batten Disease going is to vote for the BDSRA in the Project for Awesome 2026. Voting ends on Wednesday, Feb. 18.

Just head to: projectforawesome.com/videos/proje...

My friend @palermo.bsky.social’s eight year old daughter Amelia died of Batten disease, a neurodegenerative disorder, this week.

The BDSRA (Batten Disease Support Research and Advocacy Foundation) has been nominated in the Project for Awesome charity event.
projectforawesome.com/videos/proje...

A screenshot from the BDSRA about Project for Awesome. You can vote for BDSRA at: https://projectforawesome.com/videos/project-for-awesome-2026-bdsra-foundation

We need your help to continue Amelia’s fight against Batten Disease!

Please vote by 2/18 and spread the word!

Link: projectforawesome.com/videos/proje...

Thank you so much. We still have our GoFundMe here: gofund.me/011afc20b

We’ve also got a few campaigns now and later this month to support the Batten Disease Support Research and Advocacy Foundation.

I can send that info to you if you’d like!

A photo of Amelia in her beach wheelchair with the ocean waves in the background.

Thanks to the determination of Jenn and Mary Bridge staff, Amelia’s brain and surrounding fluid are among the few with CLN1 Batten Disease to join the Brain Donor Project, where she’ll be able to help neurologic researchers.

She’s not done making a difference.
In fact, she’s just getting started.

Thank you. We knew it would come some day, but we still weren’t really “ready.”

We’re starting the process of packing and prepping Amelia’s medical equipment. A huge part of me doesn’t want to get rid of her oxygen concentrator or air tanks. They helped improve her quality of life so much. But I also know they’ll go on to help others rather than gather dust here.

Amelia sits bundled in blankets in her wheelchair as the sun sets in the distance.

Thank you to Amelia’s fans for the support this week. If you’d like to help us continue the fight against Batten Disease, please vote for the BDSRA Foundation in the Project for Awesome fundraiser. Voting ends on 2/18. Please vote and spread the word:

projectforawesome.com/videos/proje...

Amelia sits bundled in blankets in her wheelchair as the sun sets in the distance.

Thank you to Amelia’s fans for the support this week. If you’d like to help us continue the fight against Batten Disease, please vote for the BDSRA Foundation in the Project for Awesome fundraiser. Voting ends on 2/18. Please vote and spread the word:

projectforawesome.com/videos/proje...

It’s so quiet in our house right now. We might turn her oxygen concentrator back on just for the familiar noise.

Amelia’s Seattle Seahawks blanket lies in her empty P Pod supportive chair

Amelia wears Seattle Seahawks gear in a park

Amelia wears Seattle Seahawks game during a game earlier this season.

Our Amelia is watching from above today, but I’m sure she can still hear her mom cheering for the Seahawks.

Batten Disease still sucks, but hopefully we get something to cheer about today.

A Halloween photo of Amelia as Amelia Earhart

For 8 years, 10 months, 9 days, 2 hours, and 13 minutes, our lives were blessed with the most amazing young girl. This morning, at 6:06 am, our incredible Amelia decided it was time. She was surrounded by family and wrapped in boundless love.

We are utterly broken, but we love all of Team Amelia.

Thank you, Sean. Not just for your support for Amelia, but also your work for all CLN1 Batten Disease kids like her.

Of course, we still hope for recovery, but right now, treating one part of her body is making another worse. Docs said it’s unlikely she goes home from this.

Amelia and her dad lie in her hospital bed together

Amelia’s mom leans in to give her cheek

A selfie of Amelia and her parents

Amelia with a full BiPAP mask and ventilator tubes

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.

Amelia lies in bed with a network of tubes leading to her BiPAP machine in the foreground.

Amelia wears a BiPAP mask while she rests in a hospital bed.

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!

Oops, I meant Rare Disease “Day”! But the rest is still correct!

A promotional flyer that reads: PANDA EXPRESS FUNDRAISER RETURNS! 28% of sales will be donated to the BDSRA Foundation WHEN Place your order for pickup or delivery on Friday, February 27! WHERE Available at Panda Express locations nationwide www.pandaexpress.com HOW Online orders only Apply code 9011704 in the Fundraiser Code box during online checkout at www.pandaexpress.com or via App

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!

A photo of Amelia on a hospital bed with her BiPAP on after being admitted to the hospital late Wednesday night.

Back again — hoping our girl recovers swiftly.

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.