On September 19, 2012, Senators Johnny Isakson and Senator John Kerry submitted a resolution designating December 3rd, 2012 as National PKU Awareness Day. Thanks to organizations like the National PKU Alliance (NPKUA) and PKU advocates like Kevin Alexander, our voices are being heard in D.C.
While this may sound odd, I find it an exciting time to have a child with PKU! Although PKU is rare, the PKU community is a very involved and active one. This is due in large part to social media, which allows parents, patients and those who care for them to be in touch, no matter our location. The sense of community I witness nearly everyday on Facebook groups and websites like Cook For Love and NPKUA lift me up when I’m feeling down about Lucy’s condition.
For my part, I am Facebooking, Tweeting and emailing my network to ask them to take a few minutes to read my blog post about the day we found out about Lucy’s PKU, and/or to watch PKU advocate Kevin Alexander’s powerful video called, “My PKU Life.” I hope that increasing awareness for this disorder will help others see that Lucy’s medical formula and medical food are absolutely critical to her diet and should therefore be covered by insurance; and show the importance of newborn screening to detect these and other disorders before they do lifelong damage to newborns.
Please join me by liking, tweeting and sharing my blog and Kevin’s video to your network. Lucy and I thank you!!