Our goal in creating The Frankfort Family Foundation for PKU is to raise awareness and advocate for Phenylketonuria and other rare diseases. We strive to educate ourselves and others, inspire hope, connect with individuals and families around the world, and support others in their unique journeys with rare diseases. All proceeds will be directed to research for a cure, please join us on our journey!
On October 19, 2017 our world changed forever when we welcomed our beautiful first born son into the world. Little did we know as we relished in all the newborn sights, sounds, and smells our world would change again. A week after bringing home our newborn son, our miracle after nearly 2 years of fertility treatment, our pediatrician called and said “there were abnormal results on Aidan’s newborn screen, 99% of the time these are false positives but we take prompt follow through.” Within 3 hours we had our 1 week old son getting further blood draws and meeting with what would become our genetics team. The following day our worries and fears were confirmed, Aidan was diagnosed with Phenylketonuria.
On February 20, 2020 our world grew again by 4 tiny hands and 4 tiny feet when we welcome our boy girl twins. A few days later we got the same devastating phone call for our second son. And let me tell you it doesn't get any easier hearing it a second time. The concept that humans are 99.9% the same and what makes us unique is that 0.1% - well it just took on a whole new meaning. But this 1 in 20,000 'uniqueness' does not define them.
We will never forget the emotions, worries, fears, and unknowns we felt in those first few weeks, even now years later they can still be pretty raw at times. We went through all the stages of grief and so many "why us" questions. But we also continue to be filled with immense pride, strength, and resiliency we didn't know existed. Thank you to our PHE-nomenal sons - we are in awe of you everyday. We love you - every part of you - more than words can say.
We believe in a relentless pursuit of a cure for PKU. No person should have to live in fear that what they eat could cause irreversible brain damage or the worry of managing complex diets and regiments.
Founded in 2020 as a 501(c)(3) nonprofit organization, the Frankfort Family Foundation for PKU is on a mission to 'fight Phe one gram at a time' through education and advocacy for PKU.
The Frankfort Family Foundation for PKU is on a relentless pursuit of finding a cure for PKU (Phenylketonuria). With your support, better treatment and an eventual cure will be possible by getting much needed financial support to the rare disease scientific community.