🧡 Today is International Batten Disease Awareness Day 🧡

We often hear about well-known illnesses like cancer, diabetes, or Alzheimer’s. But there are thousands of rare diseases silently affecting lives, frequently without enough awareness, research, or support.
Batten disease is one of them.
This rare, inherited neurodegenerative disorder primarily affects children. It causes progressive vision loss, seizures, cognitive decline, and loss of motor skills. As of today, there is no cure.
🔸 Roughly 14,000 children worldwide are affected
🔸 Incidence: 2 to 4 per 100,000 children in the U.S.
🔸 Multiple forms, each with different onset and progression
🔸 Some treatments like Brineura™ can slow progression in specific types
🔸 Promising gene therapies are currently under development
On Batten Disease Awareness Day, we take a moment to recognize the families facing this diagnosis, and the researchers, clinicians, and advocates working every day to find answers.
📢 Awareness leads to funding. Funding drives research. And research brings hope.
Let’s keep learning, sharing, and supporting those affected, because even the smallest action can help shine a light on what’s often left in the dark.