The Ulysses Neuro Podcast returns to mark Niemann-Pick Disease Awareness Month and Global Niemann-Pick Disease Awareness Day on October 19.

Our hosts Mary and Carol are joined by Samantha Berns, who has Niemann-Pick Type C (NPC), a subtype of Niemann-Pick Disease, and her mother Chris Berns. NPC is an ultra rare, progressive genetic disease that affects about 1 per million people. It causes lipids to accumulate in the brain, as well as some visceral organs, causing damage. NPC is highly variable in terms of symptomatology and age of onset: it can range from a fatal disorder within the first few months of life to a late onset, chronic, progressive disorder that might not be diagnosed until adulthood. In general, symptoms include a variety of neurological manifestations - with hypotonia and developmental delay being most common in younger children and apparent early-onset dementia or psychiatric manifestations in adulthood. Samantha and Chris share their story of living with NPC, as both a patient and parent. They talk us through the diagnosis process, the daily experience, and their roles as advocates.

For more information on NPC, supports, and Niemann-Pick Disease Awareness events, please visit the following websites:

https://nnpdf.org/resources/niemann-pick-awareness-month/#:~:text=October%20is%20Niemann%2DPick%20Awareness%20Month!&text=Support%20One%20Another%20and%20Support,Pick%20Disease%20in%20your%20community. (US)

https://nnpdf.org/resources/upcoming-events/ (US)

http://www.parseghian.org/ (US)

https://www.npuk.org/ (UK)

https://www.inpda.org/ (global)