March 9, 2022 we received my daughter’s diagnosis, KCNQ2. Our lives have been changed ever since!! Lily is a little over 2 years old, we have had 15 hospitalization stays lasting any where from 6-12 days each time. We joined the Chicago KCNQ2 summit last year, total game changer for me, as I know nothing on what to expect and hearing the families stories was the first time in over a year where I felt like someone gets it, someone truly understand what its like living with KCNQ2. I felt whole again for the first time since we received her diagnosis. It’s a crazy world out there! Lily can go from happy cooing and moving her limbs, to BAM another hospital stay! Our groups are all I have when something happens to Lily or I’m questioning something or I just need to talk to someone. Right now our KCNQ2 family know more about KCNQ2 then most of the doctors!! I’m truly grateful for everyone.
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!
This wonderful and vibrant organization is filled with dedicated and passionate people focused on a crucial mission.
With a young family member living with KCNQ2, the KCNQ2 Cure Alliance provides so much research, information, community, and love for everyone who has encountered KCNQ2. It's a wonderful organization, with thoughtful leadership. I proudly support this organization.
My daughter is almost two years old and was diagnosed with KCNQ2 within the first month of her life. From seizures to feeding tubes, I have ran a marathon without a single day of training. Because of KCNQ2 Cure Alliance and the friendships I've been able to form, I have an invaluable support network full of wisdom and advocacy. I have attended two of their summits where I have been able to hear from scientists and meet other families. The Cure Alliance has provided the summit opportunities, an informative website, a private Facebook group just for parents, seasonal Zoom hangouts, and social media posts for awareness. The networking means so much to our family that our daughter has a photo framed in her room of her with her other KCNQ2 friends she met at the summit. Our daughter and our family are thriving as best as possible because of this organization.