Social Security adds 38 new medical conditions that qualify for disability help.  The new conditions range from early-onset Alzheimer’s disease to rare diseases that primarily affect children which includes Niemann-Pick Type C!

Personally this seems like a relief for so many families. One of the goals of the Niemann-Pick Children’s Fund is how can we directly impact families especially with this kind of disease. That of course is a huge task that seems daunting at times. There are so many other rare diseases out there that are equally devastating besides NPC. It is heart wrenching to know that there are so few options. Continue Reading

Thank you for stopping by! Niemann-Pick Type C Disease is a every day reality for our two eldest sons’ Brisan and Parker including our whole family. Their prognosis captures the meaning of Niemann-Pick Disease Type C (NPC). It’s a genetic neurological disease that strikes children through accumulation of cholesterol and other excess fats in the cells of the liver, spleen, and brain. When brain cell function is blocked, the child loses coordination, stumbles, falls, and eventually will need a wheelchair, hospital bed, and other adaptive equipment. As the disease worsens, other devastating symptoms develop, including loss of the ability to speak and swallow, and seizures may occur. The health of children with NPC declines until ultimately, the disease claims his or her life. This disease affects roughly a 75 people in the US and around 500 worldwide (ever). The NPCF was formed to help create a entity that we could bring to communities that surround us the awareness needed to shed light on a disease that researchers are taking interest in. We felt after facing this reality that research has a different time line than parents yet they are making progress then why could we not help out in some shape, way or form? Continue Reading