Help Find The Cure
Pantothenate kinase-associated neurodegeneration (PKAN) is a rare neurologic disease that affects both children and adults. People with PKAN lack a chemical necessary to metabolize a vitamin in the brain. To learn more and donate to the cure click HERE.
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Dr. Hayflick's team to help find a cure for P.K.A.N.
Amelia Rose Cragen was diagnosed with PKAN on May 19th, 2015. Amelia started showing signs of developmental delay around age 1 when she wasn't meeting normal milestones. She has been in Speech Therapy since she was 2 years old, she is also receiving Physical Therapy weekly at Riley Hospital. Amelia was diagnosed after a trip to Riley Hospital's Emergency Room. A head CT was ordered after she injured her head and had a mild concussion in the fall of 2014. The CT showed calcium deposits of her brain and was followed by an MRI a few months later. The MRI was able to include more detail which showed the iron accumulation on her brain. Genetic testing confirmed the diagnosis; PKAN.