2019 Northeast Ohio PKD Walk

It’s that time of year again!  The 2019 Northeast Ohio PKD Walk is on September 21st.  As usual, Team William will have its walking shoes on.  We’ll trek through the Bedford Reservation and then head back to the Garrott house for hotdogs, burgers, and maybe a beverage or two!  Gotta keep those kidneys hydrated!

Our Story

My son William was born with a genetic condition called Autosomal Recessive Polycystic Kidney Disease, or ARPKD.  He had both kidneys removed before he was a year old and relied on a special kind of dialysis until he received a donor kidney shortly after his second birthday.  Those first few years were difficult, but I’m happy to report that Will is a happy and healthy fourth grader today.  He plays soccer and takes swimming lessons.  He is the only member of the household looking forward to his playing the recorder for music class.

PKD Foundation

It makes sense to approach any fundraising campaign with skepticism.  Are these folks legit or is my money paying for private jet trips?  Does the money fund actual progress or is it all going to fund the next marketing campaign?  The PKD Foundation is legit and act as good stewards of the funds entrusted to them.  It’s been exciting to watch the program grow.  They’re still based in Kansas City and are the only organization in the US to focus solely on PKD.  Money goes towards research, education, advocacy, support, and awareness.  The two things I watch the most are the research and advocacy.

The PKD Foundation was able to fund 11 PKD researchers this year and the number continues to grow.   Advocacy is an often overlooked aspect of charities.  The PKD Foundation has been able to step up its work in Washington DC.  The more ears we can bend in the nation’s capital, the better.  The PKD Foundation is working towards federal research and legislative solutions that will have an impact on PKD families.

What Can You Do?

Support Team William!  This year we’ve got a little competition going on in the house between Mom, Dad, and William to see who will raise the most!  When asked which team he will support, Matthew Jr replied, “Yellow” and turned on his “Meet the Colors” DVD.  I assume this means he is on Team Dad.

If you made it to the end of this post, thank you!  Feel free to stop by for a late lunch (1:30 or so) at our house after the walk.