Four years ago, the Linzer family of Lynbrook was devastated to find out that their daughter, Quinn Madeleine, was diagnosed with Type-A Niemann Pick Disease, a potentially fatal illness. The average life expectancy for a person living with Niemann Pick Type-A is poor, and most infants diagnosed do not make it past ages two or three. The inherited disease causes an abnormal lipid metabolism and causes a buildup of harmful lipids in various organs. Sadly, the Linzer family lost Quinn. After experiencing this heart-breaking loss, Brett and Eileen Linzer, Quinn’s parents, wanted to bring more awareness towards the disease to try and help other families going through the same awful tragedy. In honor of their daughter, Brett and Eileen started the Quinn Foundation, which helps raise awareness for the disease as well as raise money to try and find a cure.

The time following the loss of their daughter was an incredibly sad time for the family and a reminder of how unpredictable life can be. “Quinn was a close family friend of mine and lived across the street from me,” stated Candace Dellacona, a former friend. “Eileen and Brett asked me to be a director of the board and help them start a foundation, which was a huge honor.” added Dellacona. Dellacona had the same vision as Eileen and Brett and wanted to learn more about the disease and how to help prevent it. “Throughout all of these years, we have had two missions: to stop the spread of Niemann Pick Disease, and to create memories for families going through similar experiences,” explained Eileen Linzer. The foundation was created to grant wishes to terminally ill babies and toddlers who would not be helped by other organizations such as the Make-a-Wish Foundation and to fund research into finding a cure for the rare disease. Last year, the Quinn Foundation raised more than $25,000 to make this possible.

One of the notable events that the foundation holds is an annual 5K race. The race has become a major event in Lynbrook, as purple ribbons could be seen hung on trees all over town on race day. “Brought to attention by my wife, I wondered what these ribbons were for, and once I found out, I became quickly aware and wanted to be a part of the cause,” commented this year’s 5K winner Paul Curtis. Town members came to support the foundation and the Linzer family by participating in the race around Greis Park. At the event, participants wore purple tee shirts to honor Quinn and carry on her fight. The Linzer family has remained very thankful for all the love and support the community has shown since the start of the foundation.

“I am so glad to be contributing to finding a cure and supporting this family on their journey,” stated Christine Duran, the female winner of this year’s race and who also grew up close to Eileen. Duran went to high school with Eileen, and she has a daughter who goes to school with Quinn’s older brother.

The Linzer family is determined and focused on honoring their daughter for the rest of their lives; they are focused on raising more and making life-changing wishes for families and babies with critical illnesses. They hope to contribute to more studies on the disease and maybe find a way of preventing its life threatening health effects. Aiding in helping families cope with the lost lives of their loved ones by participating in this event is another way to show families that they are not alone. They are not by themselves and have other people and parents of a diagnosed child to connect with. The Quinn Madeleine Foundation is a way to foster good will and positivity among supporters and for families going through the same circumstances.