Batten Disease Awareness Day: Shining a Light, Sharing a Story 🌟🧡

June 9 is not just another date on the calendar—it’s International Batten Disease Awareness Day, a day when families, advocates, and organizations around the globe unite to shine a light on one of the world’s rarest and most devastating childhood diseases. At Clinakos Inc., we stand with the Batten community, amplifying voices and stories that too often go unheard.

🤔Why Batten Disease Awareness Matters
Batten disease is a group of rare, inherited neurological disorders—sometimes called “childhood dementia”—that rob children of their abilities, causing seizures, vision loss, and a heartbreaking decline in physical and cognitive skills. It affects about 1 in every 100,000 children, but its impact on families is immeasurable.

💪Stories of Strength: Amelia’s Journey
Amelia’s journey began when she was diagnosed with the rare and devastating CLN1 variant of Batten disease at age two. As her condition progressed, Amelia lost her ability to walk, talk, and see, and she now relies on her family for round-the-clock care. Despite facing daily challenges like seizures and hospitalizations, Amelia’s spirit shines through—she enjoys music, relaxing in the hot tub, and being surrounded by her loving family. Her story is a moving example of courage and resilience, underscoring the urgent need for increased awareness, research, and support for families affected by rare diseases like Batten.

At Clinakos, we believe in the power of data, compassion, and community. Today, we honor every child, family, and researcher fighting Batten disease. Let’s turn awareness into action—because every story, every step, and every share brings us closer to a cure.

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👇Check here for Amelia’s full story