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Recent Posts

• Our family’s fight for hope, treatment, and everyday joy
• Chest port for Brineura in CLN2 more stable than scalp-based device
• I won’t stop fighting for my son’s treatment — and his future
• Vacuolated lymphocytes help diagnose Batten in 7-year-old
• From aspiration to advocacy: A mother’s journey with CLN2 disease
• Why caregiver respite is crucial for rare disease parents
• Sex-specific sleep disturbances found in juvenile Batten mice
• United for change: Advocating for greater rare disease awareness
• Gene therapy improves bowel function in Batten mouse model
• Hope and resilience: Parenting a child with CLN2 disease