My Nonprofit Reviews

The KCNQ2 Cure Alliance has been life changing for our family. We adopted our daughter knowing she had the diagnosis but not knowing what her/our future would look like. Then we found The KCNQ2 Cure Alliance! They have given us so much information, guidance and support in this journey with our sweet girl. Because of them we have connected with other families around the world and here the US. These connections have been a vital source of reassurance that we aren’t alone. They are integral in connecting us to medical databases, ongoing research studies and new treatment options. When you hear the words “ultra rare disease” it can be terrifying. Finding out that you aren’t alone is so reassuring. Building a community is so important and they have been there to bolster the process in every way they can. Words will never begin to express what they have done for our family. We are forever grateful for the hard work that The KCNQ2 Alliance puts in day after day to help everyone effectively navigate this course we are on. A simple thank you will never suffice. Nonetheless, thank you!