The Quinn Madeleine Foundation Information

The Quinn Madeleine Foundation's mission is to aid in the prevention of - and support research on treatment and a cure for - Niemann-Pick Disease Type A, and to facilitate memorable experiences for children under age 3 who have been diagnosed with a terminal or life-threatening illness. Awareness for hope. Niemann-Pick Disease, Type A is a rare terminal genetic disease, affecting children in their infancy and taking their lives in their toddlerhood. Though the incidence rate is not officially calculated, there are approximately 3-4 children in the US diagnosed each year. To put that into perspective, there were 3.95 million children born in the US in 2011. As with any disease of this rarity, there is very little research – and even less funding – dedicated to finding treatment or a cure. Our goal is to thwart the disease before it even begins, and in the event that we miss one, to offer a modicum of hope rather than the "go home and love her"​ advice Brett & Eileen were given about Quinn. Memories for life. After receiving Quinn's diagnosis of Niemann-Pick Disease, Type A, parents Brett and Eileen made it their quest to see that Quinn, and her brothers, had the best life possible during her short time here. And with the help of an incredible support system, they were able to fulfill much of Quinn’s List. Unfortunately, not everyone is surrounded by the level of support that Brett and Eileen were fortunate enough to experience. And traditional wish-granting organizations do not grant wishes to children under the age of three. Quinn died when she was not even 15 months old. The average life expectancy of a child with NPA is 18mos-3 years… With Pompe's Disease it's less than a year… With Gaucher's Disease Type 2, it's 2 years… With Mitochondrial Disease, it's nine months of age… You get the (bleak) picture. These children are deserving of smiles, and their families are deserving of memories. And through Quinn’s List, our goal is to give them both.