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Philip (My Terrifying Scary Name is “Batten Disease”) Palermo
@palermo.bsky.social
Father of a child with CLN1 Batten Disease (searching for research funding and first-ever cures)
I make videos for TV Guide, GameSpot, Fandom.
And I take photos of the sky for fun.
GoFundMe for Amelia’s medical expenses: gofund.me/ef175266
142 followers428 following533 posts
New video on Amelia’s YouTube channel all about her recent casting for new Ankle Foot Orthotics — fancy braces to help with neurological symptoms like spasticity. Casting Time for Amelia! #battendisease#casting#raredisease#spasticity#neurologyyoutube.com/shorts/e5FgM...
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
YouTube video by For Amelia Palermo (Batten Disease Awareness)
PT
Philip (My Terrifying Scary Name is “Batten Disease”) Palermo
@palermo.bsky.social
Father of a child with CLN1 Batten Disease (searching for research funding and first-ever cures)
I make videos for TV Guide, GameSpot, Fandom.
And I take photos of the sky for fun.
GoFundMe for Amelia’s medical expenses: gofund.me/ef175266
142 followers428 following533 posts