#BattenDay2024
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palermo.bsky.social
For International Batten Disease Awareness Day, I rounded up shows and films that feature this horrific, fatal disease. It's a deeply personal topic, as my daughter has the CLN1 type. We're still hoping for a cure, but we need help to get there.

#Battenday2024

www.tvguide.com/news/the-bes...
The Best Movies and Shows to Watch for International Batten Disease Awareness Day
To get the word out for International Batten Disease Awareness Day, we're listing off the movies and television shows that mention the condition, including Chicago Med and Love, Kennedy.
www.tvguide.com
June 9, 2024 at 8:31 PM
palermo.bsky.social
For International Batten Disease Awareness Day, Jenn and I created a video celebrating some of the amazing children dealing with CLN1 Batten Disease, a horrendous and fatal genetic disorder.

Please give it a watch and consider sharing to spread the word!

#BattenDay2024

youtu.be/EVk4RrBHTTE?...
The Faces of CLN1 2024 | International Batten Disease Awareness Day 2024
This video showcases many of the amazing children who have been diagnosed with the CLN1 variant of Batten Disease. We're publishing this on June 9, 2024 in h...
youtu.be
June 8, 2024 at 10:35 PM
palermo.bsky.social
Batten Disease Awareness Day is June 9th and you can help by being an advocate!

The BDSRA has a pre-filled message ready and all you need to do is fill out your info and it’ll send to your legislators.

Please help us save lives!

#BattenDay2024

advocacy.charityengine.net/Default.aspx...
International Batten Awareness Day 2024
BDSRA Foundation | Powered by CharityEngine
advocacy.charityengine.net
June 7, 2024 at 7:52 PM
palermo.bsky.social
#battenday2024
A writing prompt from the BDSRA asking Batten Disease families to share their stories. A photo of Amelia at the beach with her dad. A screenshot that reads: Name of Family: The Palermos Name of affected child/children: Amelia CLN type: CLN1 Where has the path with Batten disease taken you?: Batten Disease has taken us down a far different path than what I had originally hoped for Amelia. She was just learning to walk when Batten Disease stole so many abilities from her. I was looking forward to chasing her around the park. Maybe she’d get into sports, or science, or music, or something else. I was looking forward to taking it easy on her in Mario Kart only for her to get the hang of it and start dominating her parents. I was looking forward to seeing her dance and sing. I was looking forward to hearing about her day at school and learning about her favorite color. Part two of a screenshot that reads: Batten Disease took all of that away from her and much, much more. Nowadays, we’re working as hard as we can to keep her happy, to keep her airway clear, to keep her lungs healthy, and to keep her out of the hospital. We’re on a path where the main goal is keeping her comfortable and safe — while we keep pushing for a potential cure. And I still wonder what her favorite color would be. #battenday2024
June 6, 2024 at 4:07 AM