Walk for PKD — Twin Cities

The first fall Walk for PKD event is just around the corner. Throughout the country, participants are breaking in their walking shoes and beginning this year’s fundraising efforts. In preparation, we caught up with Sue Truhlar, a long-time, dedicated fundraiser for PKD Foundation. Read on to find out how Sue is using her personal PKD story to raise awareness of polycystic kidney disease (PKD) as a Walk participant and fundraiser.

Q: Can you share a little about yourself and how you got involved with the PKD Foundation?

Sue: I became aware of PKD quite early, as my paternal grandmother had the disease. At that time, they called it Bright’s Disease. My paternal grandmother passed away in 1956. Now, knowing what she was suffering from, it breaks my heart. They didn’t know enough about the disease for her to benefit and they really couldn’t do much for her.

Later, my father was diagnosed with PKD. He received a transplant at the age of 54, in 1973. He lived for five years with a new kidney from a cadaver. Through the years, eventually all my siblings discovered they also had PKD.

As you probably know, PKD has a 50/50 chance at every birth. Of the five children in my family, we eventually found that I was the only one NOT to have PKD. Growing up it was very hard to watch the effects of PKD on my siblings. I have always felt guilty that I was so healthy and as a result, I always wanted to do something!

Q: What are some of the ways you work to help raise awareness for PKD?

Sue: When it came time for the first sister to have a transplant, our doctor was not in favor of one of us donating, but my sister did end up having two transplants before passing away. Later in 2003, when there had been many successful transplants from living donors, I did get tested when another sister and my brother both needed a transplant at the same time. I was a great match for both, matching five out of six things that would qualify.

My brother’s wife really wanted to donate to him, and I donated to my other sister on January 6, 2004. My brother’s transplant was not successful, and he’s been on dialysis for more than 22 years now. My sister is still living with my kidney – much to my delight! I FINALLY could do something! My last sister Pat also had PKD but passed away from pancreatic cancer in 2014. PKD has also affected many of my nieces and nephews. So, you can see PKD is very near and dear to my heart.

Q: When did you begin participating in the Walk for PKD?

Sue: In 2001, my sister Pat and I both decided to walk in the very first Twin Cities Walk for PKD and I have continued to participate in the Walk ever since. Our team consists of our family and extended family members. When we began walking for PKD it was more widespread yet relatively unknown. We believe this Walk continues to bring much needed attention to such an awful disease!

Q: Is your fundraising primarily through the Walk or does it happen in other areas, too?

Sue: The way I fundraised while working was by sending an email out to those I worked with. I also shared information about the Walk at Curves where I exercised, and I posted a letter including a picture of a normal kidney next to a diseased one. I also sent this same letter and picture to our close neighbors, friends and family.

Q: What are some of your favorite moments or memories that stem from your fundraising work?

Sue: I suggested to Gary DeGrande, who was involved in the Twin Cities Walk, that we should try to get on the local radio and talk shows to promote the Walk and awareness of PKD. He was successful one year in doing this before he moved.

How you can participate, too

This year, 54 Walk for PKD events will take place across the country with a goal of raising $2,000,000 for PKD research. The family-friendly events draw large gatherings of PKD patients, families, and supporters in communities across the country and feature activities for participants of all ages.

To find a Walk for PKD event near you, visit walkforpkd.org and register today. Let friends, family and co-workers know about your commitment to ending PKD by tagging photos and comments using the hashtags #WalkforPKD and #EndPKD on social media. If there’s not currently a Walk for PKD event in your community, you can join a Virtual Walk and still fundraise for PKD. To get started, email us at walkforpkd@pkdcure.org.