Support Texas Children's The Benson Family

When Christiane Benson was born in 2003, her parents, Charlotte and Craig, were struck by her strong resemblance to her father. Her big, blue eyes were clear and bright. Growing up in Austin, Texas, Christiane loved playing the piano, cooking, and spending time with her younger brother and two dogs. But by the age of five, she began losing her vision.

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In March 2008, the Bensons learned that Christiane had Batten disease, a rare neurodegenerative disorder that leads to vision loss, seizures, behavioral problems, and eventually death by the late teens or twenties.

Devastated, Charlotte and Craig founded the Beyond Batten Disease Foundation in 2008, determined to find a treatment for the condition. Within a year, they raised $2.5 million to support a research team led by Dr. Andrea Ballabio at the Duncan Neurological Research Institute (Duncan NRI). The foundation’s partnership with the Duncan NRI spurred critical research into the causes of Batten disease, focusing on how mutations in the CLN3 gene disrupt the brain’s ability to clear harmful cellular debris.

After years of research, the team identified and named a promising drug, Batten-1. In 2022, they launched the first clinical trial for Batten disease, a milestone that offered hope for a disease previously without treatment. Christiane was the first participant to begin taking the drug, and she has remained seizure-free for over six years. She danced at her senior prom, graduated from high school, and is working four days per week while auditing classes at The University of Texas Austin, where she is also an honorary member of Kappa Kappa Gamma sorority.

Thanks to Texas Children’s and the dedication of researchers at the Duncan NRI, the Bensons and many other families now see a brighter future. Charlotte Benson expressed her gratitude: “This research has not only changed Christiane’s life — and ours — but also has brought hope to many other families around the world impacted by this and similar brain diseases.”

You can help support life-saving care and groundbreaking research for patients like Christiane.