Let’s Welcome Bianca and Her Son, Manuel, to the BBDF Community.

Bianca Vidal recently wrote to us and was kind enough to let us share her story. Let’s give her and her son a warm welcome.

“My son Manuel is a 17-year-old young man who was recently diagnosed with this terrible disease. Even though at 10 years old he started losing his vision, I never imagine it could be something else. Last year his health started to decline dramatically – it was then that a Doctor found the disease in him. He is declining faster than I thought. He can barely walk and talk now, and he does not recognize who I am most of the time. It is heartbreaking to see him like this. Even though he has good and bad days, his positive attitude is always there. And he always has a big smile for everybody and loves to show off his ‘muscles’.”

Dr. Marco Sardiello’s Research on Batten Disease Paves Way for New Treatments

A team led by researchers at Baylor College of Medicine has uncovered an unexpected mechanism that can explain a form of Batten disease called neuronal ceroid lipofuscinosis 8. The findings published in the journal Nature Cell Biology provide potential new targets for future therapeutic interventions for this rare and incurable disease.

Click here to read the full article. 

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