What is PKAN? is a degenerative disease of the brain that can lead to parkinsonism, dystonia, dementia, and ultimately death. Neurodegeneration in PKAN is accompanied by an excess of iron that progressively builds up in the brain.
We only learned about this ourselves recently, when our new neighbor Erin moved in. Sadly one of her sons has Pantothenate kinase-associated neurodegeneration (PKAN)
This year will be the 2nd Annual Ride for Riley Motorcycle Run. Which takes place on August 19th and we proudly had the pleasure of donating sew-on patches for the event.
We also made a second limited run of velcro backed patches to help raise money and bring awareness to this cause. These patches are 4x3 inches and velcro backed.
Below are links to a recent online article about her son and his disease. As well as the foundation that is trying to find a cure and ways you can help.
Spoonville Foundation http://nbiacure.org/spoonbill-foundation/