About The Quinn Madeleine Foundation
Established in 2014 by Brett and Eileen Linzer, The Quinn Madeleine Foundation - a 501c3 non-profit organization - seeks to fill two major voids - one in the larger world of terminally ill children, and the other in the smaller world of Niemann-Pick Disease, Type A.Awareness for hope.
Niemann-Pick Disease, Type A is a micro-rare terminal genetic disease, effecting 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 3,953,590 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 hasten the day when parents are no longer given this diagnosis accompanied by the singular advice: "Go home and love her". Instead, they will be handed a brochure, a card, the name of the person or treatment that will cure their baby and allow them to flourish and grow into child- and adulthood.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. The organization is entirely volunteer-run, allowing 100% of proceeds to go toward fulfilling our mission.
