Blaine’s son, Matthias, was diagnosed with ARPKD in utero

Our Fundraise Your Way program is one of the best ways you can help create a future without PKD. When you turn your hobbies and passions into creative fundraisers, 100% of the money you raise goes directly to fund PKD research. You can help give hope, like our friend Blaine. Check out his story:

If you forget everything you learned in school about genetics, you get a refresher course when your child is diagnosed in utero with a genetic disease like autosomal recessive polycystic kidney disease (ARPKD). My name is Blaine Moore, and my wife Michele and I are both carriers of the recessive gene that triggers polycystic kidney disease (PKD). Since this gene is recessive, each of our children had a one in four chance of carrying the disease. Our fifth child, Matthias, has the disease. From a statistical standpoint, our other four sons beat the odds, and from a health standpoint, Matthias has also beaten the odds. Due to complications of his condition, Matthias faced some steep challenges as an unborn child and also in his first few weeks after being born. Those early days required a good amount of prayer and love and the care of some truly special medical professionals. Now we are blessed and grateful that he is 15 years old and at this point is symptom-free, with normally functioning kidneys and a passion for baseball.

Blaine, crossing the finish line at the “Little Apple Marathon” in Manhattan, Kan.

Our family has been aware of the PKD Foundation for a number of years, but only recently found just the right way to get involved. As an avid runner, I began training for my first marathon in the late summer of 2018. I knew that people often run for a cause or a charity, and my choice became instantly clear: I would run to raise support and awareness for the PKD Foundation. It is also true that every runner has a “why,” the one thing that keeps them going, especially on a long run. My “why” during my marathon would be my son, Matthias.

When I called the PKD Foundation the first time, I didn’t know if anyone had ever done what I had in mind. I was thrilled to find out about their Fundraise Your Way program. One helpful conversation with a member of the Foundation’s fundraising team set me on the right track, and within a couple of days I had created my own FYW page and had my first donors. Putting together my fundraising page was so simple and straightforward! Best part: it felt amazing to be doing something small to help the greater good. By simply linking an activity I was going to do anyway with FYW, I was able to join in the work of the PKD Foundation. The same could be true for anyone who wants to make a difference but is struggling to figure out how to make it happen. FYW is the way to make it happen.

Your events, hobbies and celebrations are only one step away from giving hope to the PKD community. Head over to the Fundraise Your Way page to create your fundraising page now and start spreading the word!