@palermo
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
I was literally just doing the math in terms of how much funding a potential Batten Disease clinical trial needed before it eventually got shelved a few years ago. The answer: Likely less than 10 minutes’ worth.
Editing the slideshow for your daughter’s memorial is…. let’s call it emotionally draining.
But you better believe I wouldn’t let anyone else do it.
A photo of a younger Amelia and her dad facing each other
It’s been a full month since we lost our Amelia. It still doesn’t feel real sometimes — like if we can prove we can handle being without her, we’ll get her back.
I miss her so much.
A small group of Orcas near Commencement Bay in Tacoma.
A small group of Orcas near Commencement Bay in Tacoma.
A small group of Orcas near Commencement Bay in Tacoma.
A small group of Orcas near Commencement Bay in Tacoma.
We did a bit of orca watching on a rainy Friday afternoon. Jenn and I started up at Dash Point and then followed a pod down to Tacoma’s Commencement Bay. Actually saw orcas while we drove down the road. It’s been about a year since we first saw orcas with Amelia and we hope we’ll see more this year.
A few days after we lost Amelia, our friends lost their son Tegen to CLN1 Batten Disease. We’re thankful he passed surrounded by family as well.
I wouldn’t wish this feeling of loss on anyone.
Batten Disease is a horrendous condition and we need treatments and cures now.
Now.
Same reply I had on Threads:
I was born with a deficiency in my PPT1 gene of “unknown significance.” Now the significance IS known b/c it can lead to the CLN1 Batten Disease my daughter was born with. Research is slowly advancing, but it’s still a fatal disease with no available cure.
As Jenn aptly put it this weekend, the mere act of turning the calendar to March was emotionally draining. As long as it was still February, we could tell ourselves we still had Amelia for part of this month. Now, we begin her birthday month without her and it’s just been tough.
Reposting for the weekday crowd. We’re hoping to get more landmarks to recognize Rare Disease Day next year, but this was a great start.
I’m just very proud of the work Jenn put into getting these landmarks to recognize Rare Disease Day, all while dealing with the worst month of our lives.
A photo of the Columbia Center in downtown Seattle lighting its crown in pink to support Rare Disease Day
I redownloaded Twitter just to grab this screenshot of a post by the Columbia Center social media team acknowledging Rare Disease Day. I promptly deleted the app again.
Lighting at the under-construction Mary Bridge Children’s Hospital in Tacoma displaying colors in support of Rare Disease Day
Lighting at the under-construction Mary Bridge Children’s Hospital in Tacoma displaying colors in support of Rare Disease Day
For Rare Disease Day (2/28), the amazing Jennifer Palermo reached out and got Seattle’s Columbia Center and the under-construction Mary Bridge Children’s Hospital in Tacoma to light up in Rare Disease Day colors!
Team Amelia Forever ❤️
#lightupforrare #rarediseaseday #raredisease #battendisease
A graphic from the BDSRA recognizing Feb. 28, 2026 as Rare Disease Day
I know A LOT is happening right now, but I want to share that today is Rare Disease Day.
It’s our first time recognizing the day without our Amelia, but we will continue shining a light on a cause that absolutely deserves far more attention than it typically receives.
Post a pic you took, no context, to bring some zen to the feed.
A closeup of recently purchased food from Panda Express as part of a BDSRA fundraiser
Last year, we picked up Panda Express for the BDSRA fundraiser while Amelia was in the ER and we ate by her bedside.
This year, we’re supporting the BDSRA again, but in a much quieter, much emptier home.
Batten Disease sucks.
Team Amelia forever.
I know Amelia’s life was far, far more than just a collection of medical equipment, but I do feel a tinge of sadness when a piece of rented equipment is taken back. We also have some gear we’ll likely donate to help other kids, but it’s hard not to feel like we lose a bit each time something leaves.
Thank you!
Thank you!
Today's the day to enjoy some Panda Express and support an under funded disease in Amelia's memory
My friend recently lost his young daughter to a little-studied illness. He is raising money to help save other children with the disease. All you have to do is order some food online from Panda Express and use this code to donate! Easy peasy!
And please share! Thank you!
None of us want to cook on Friday. Why not grab some Panda and do a good deed as well! 💜😺 In honor of Amelia 💜💜
A screenshot that says: 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
A photo of Amelia on a walk in Tacoma with her parents.
We want to keep fighting for Batten Disease awareness in Amelia’s name. We miss her so much.
Friday (Feb. 27th) is an amazing chance to help the Batten Disease Support Research and Advocacy Foundation!
Use Code 9011704 on online or app orders for any Panda Express and 28% goes to the BDSRA!
Worth a shot: @flavorflav.bsky.social has been great about boosting stories! Any chance you’d be willing to help keep our daughter’s fight against Batten Disease going? We lost her a few weeks ago, but we want to keep raising funds for this incredible Batten Disease foundation.
Super easy way to help raise money for a great cause. We did it last year and are planning to do it again tomorrow.
Panda Express lets you order online for drive-thru pickup, so you don't even have to get out of your car!
A photo of Panda Express’ Virtual Community Fundraiser
A flyer that says: 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
Got dinner plans on Friday? Here’s a great chance to keep Amelia’s fight against Batten Disease going by supporting the Batten Disease Support Research and Advocacy Foundation!
This is the second year we’ve done this and we’re hoping to surpass last year’s total!
Use code 9011704 at Panda Express!
A photo of Panda Express’ Virtual Community Fundraiser
A flyer that says: 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
Got dinner plans on Friday? Here’s a great chance to keep Amelia’s fight against Batten Disease going by supporting the Batten Disease Support Research and Advocacy Foundation!
This is the second year we’ve done this and we’re hoping to surpass last year’s total!
Use code 9011704 at Panda Express!
Hoping for the best, and hoping they can accommodate while keeping risk as low as possible.
And I know that’s not how it works. I have to remind myself that she’s gone and it erases any of the dopamine my brain was trying to sneak in. I miss her so much.
Grief is frustrating. You know how when a loved one goes on a trip and you’re like, “It’s OK, they’ll be back in a few days.”? I can feel my brain trying to convince me, “Oh if you can get through this task/day/week, we’ll be that much closer to Amelia coming back.”
Updated my profile pic ahead of Rare Disease Day on Feb. 28, 2026.
A screenshot of a BDSRA flyer describing an upcoming fundraiser: 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
A photo of Amelia and her parents by the water
For all Team Amelia folks out there: This Friday is an awesome and easy way to support the Batten Disease Support, Research, and Advocacy Foundation by ordering at Panda Express and using code 9011704 at checkout!
28% of proceeds go toward the BDSRA as part of Rare Disease Day!
As Rare Disease Day approaches on Feb. 28, Jenn has again written about our rare disease hero: Amelia. As you can imagine, this year’s update was much harder to write, but we’ll gladly continue sharing her story and continuing her fight.
www.rarediseaseday.org/heroes/ameli...