Batten Disease is a rare, terminal neurodegenerative condition that severely impacts children and young people. It’s heartbreaking, and I want to thank the Batten Disease Family Association for their tireless support of families facing this cruel disease. | Ed Davey
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Batten Disease is a rare, terminal neurodegenerative condition that severely impacts children and young people. It’s heartbreaking, and I want to thank the Batten Disease Family Association for their tireless support of families facing this cruel disease. | Ed Davey
2K views11 months ago
FacebookEd Davey
What If We Could Understand Batten Disease Progression?
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What If We Could Understand Batten Disease Progression?
1.7K viewsFeb 7, 2025
YouTubeDel Monte Institute for Neuroscience
What Is Batten Disease? 4-Year-Old Boy Receives New Drug For Neurological Disorder
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What Is Batten Disease? 4-Year-Old Boy Receives New Drug For Neurological Disorder
Sep 8, 2017
International Business TimesPritha Paul
Jonathan D Cooper, PhDUnderstanding Batten Disease Pathogenesis
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Jonathan D Cooper, PhDUnderstanding Batten Disease Pathogenesis
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YouTubeLabroots
A new children's book is helping families talk about rare, fatal Batten disease
A new children's book is helping families talk about rare, fatal Batten disease
Dec 3, 2022
ABC NewsKathleen Calderwood
Ellery is diagnosed with a progressive and terminal disorder known as Batten disease. This deadly disease takes away a child’s ability to walk, talk, speak, and see. As of now Ellery is still able to say a few words like “Mickey” and “Twinkle” but her parents know this will not last forever. Ellery’s mom wants the world to know that they try to focus on the joy but Batten disease is forever destroying a part of their family. | Special Books by Special Kids
23:17
Ellery is diagnosed with a progressive and terminal disorder known as Batten disease. This deadly disease takes away a child’s ability to walk, talk, speak, and see. As of now Ellery is still able to say a few words like “Mickey” and “Twinkle” but her parents know this will not last forever. Ellery’s mom wants the world to know that they try to focus on the joy but Batten disease is forever destroying a part of their family. | Special Books by Special Kids
614.9K viewsDec 8, 2022
FacebookSpecial Books by Special Kids
Laura's story
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Laura's story
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Southern California mom works to fight Batten Disease
2 weeks ago
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Batten Disease – Vision & Brain Loss #dnasequencing #rarediseases #pediatric #science #humanbiology
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Alberta siblings with rare, terminal disease finally have hope for a treatment
Aug 10, 2023
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Ultra rare ‘one-in-eight billion’ genetic disease hits 3 Alberta siblings
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CLN2 Batten Disease progression - Noah's Hope
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Batten Disease
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Jan 7, 2020
beyondbatten.org
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Today is International Batten Disease Awareness Day 🧡 This means that families all over the world will be raising awareness of a disease which affects children and young adults. Batten Disease has no cure and is always fatal. Help us to create awareness by interacting and sharing our posts 🧡 We are super proud of our little girl, she was born into a world of rare disease. At three years old she is already advocating for her brother and sister who are affected by this horrific disease 💔 Batten
7.1K viewsJun 9, 2023
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Family fighting for cure after daughter's batten disease diagnosis
9 months ago
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A Child With Batten Disease
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What is Batten disease? Doctor and family share insights on rare condition
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Designing an 'n of 1' drug for Batten disease | Boston Children's Hospital
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YouTubeBoston Children's Hospital
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The Faces of Batten Disease
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YouTubeBeyond Batten Disease Foundation
Life-changing Batten disease drug gives hope to children affected by fatal illness
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