Meet Nicholas. Nicholas was diagnosed at the age of 2 and is now 17 years old. He has a tracheostomy and cannot walk or talk. He currently receives palliative care and requires two nurses to care for him.

Eli was diagnosed with Alexander Disease at 18 months old after a sudden cluster of seizures. Since then, his journey has been marked by resilience through neurological regression, seizures, and significant medical challenges. Today, Eli is nonverbal and requires full caregiver support, yet he continues to fight for connection and expression, reminding us why research, advocacy, and community matter so deeply.

After what appeared to be a healthy start, Brynn’s journey shifted following seizures and developmental delays that ultimately led to a diagnosis of Alexander Disease. Despite the heartbreak, Brynn continues to meet the world with smiles, strength, and determination, surrounded by a family and community who stand firmly beside her.

After years of unexplained illness and countless tests, a brain MRI finally revealed the cause of Emory’s suffering. Now living with Alexander’s disease, she continues to shine brightly in her community, bringing joy to everyone around her while her family holds hope for new therapies and a cure.

After a sudden illness revealed abnormalities in the white matter of his brain, Willany’s life changed forever. Now 3.5 years old, he continues to grow in small, meaningful steps, teaching his family how to find beauty, hope, and strength in even the quietest moments.

After developmental delays and seizures led to a diagnosis of Alexander disease, Asa’s journey took an unexpected turn. Yet his joy, determination, and bright smile continue to inspire everyone around him, reminding us to celebrate every milestone along the way.

After what seemed like a simple fall, an MRI revealed abnormalities in the white matter of Rober’s brain, changing his family’s life forever. Now just three years old, Rober faces Alexander disease with extraordinary courage, while his family shares their story to make the invisible visible and hold onto hope for research and new therapies.

Diagnosed at two and a half years old, Caio’s life changed after a sudden infection and seizure led to progressive loss of motor and speech function. Now 31 and stable, his family continues to care for him with deep love and unwavering faith, holding onto hope through ongoing global research efforts.