48 Mann St
Cheektowaga NY 14206
Phone:  716-725-3212

Staci Kasprzyk

Norah was born October 11, 2014 and was the most beautiful little girl I had ever seen.  Being a new mom was extremely terrifying and even more so when we found out our daughter had PKU. It was so scary and we had so many questions. We were so blessed to have had so much support through different support groups and different parents in the area. It took me a couple of months to come to terms with it, but then I realized that I wanted to do all that I could to be that support for new parents going forward.


Now, when a new baby is diagnosed they are given my contact information. It feels good to be able to share my experiences and tell how well Norah is doing. I am on the board of the Western New York PKU Association, as well as the chairperson for the 2017 Lifting the Limits for PKU gala. We do many fundraisers to raise money to help find a cure for PKU. I went to Washington, DC to lobby for the Medical Foods Equity Act with the NPKUA. We have a lot of different events coming up and I will continue to do this until we find a cure!