Published July 08, 2021 | When you receive a diagnosis, it’s easy to focus on the negatives. Instead of being pessimistic, Rob Herman is focused on creating change for PKD. Today, he details his experience with PKD, how he spreads PKD awareness, and his creative Fundraise Your Way projects.

My PKD Family History

Rob Herman and daughter, Kaley (2018)

As many of you know, PKD is hereditary, which means it’s passed down from a parent(s). My mother had PKD so she gave it to me. When I was nine years old, my mother had a massive stroke that left her, as her surgeons called her, a “vegetable.” That was my first (ugly) experience with this thing called polycystic kidney disease. When I was 14, I had surgery for scoliosis which was probably due to PKD. As an adult, I had two hernia surgeries at different ages and meniscus surgery on my left knee, possibly linked to PKD.

In 2002, I married my wife, Linda, and welcomed her to PKD. Linda, with her medical background, immediately began learning everything she could about this hideous disease. I was placed on the transplant list in 2006, and my kidney transplant was in 2009 followed by years of complications. Due to those complications and the impact on my job, I was asked to retire.

Fundraise Your Way: Crafting for Change

I joined the Patriot Guard Riders (PGR) to give back. PGR members stand in honor of military family funerals. I told them about PKD. In 2020, I decided to try making wooden American flags. I love this great country, and my dad taught as a boy how to use various tools. It was and still is a labor of love! My brothers and sisters in PGR are mostly war-torn Veterans and a buddy asked me to make him one so I did. But I didn’t charge him. I told him it was free for defending me and our country. I felt so good giving back when I was feeling so horrible health-wise. It energized me so much that I decided for every flag I sell I’ll give one away to a Veteran.

This wooden American flag was featured at a campaign fundraiser for city council. The flag went for $500 at auction!

For each one I sold or gave away, I told people about PKD and they always responded with, “What’s that?” I wanted to reach more people, spread more awareness. It suddenly was a small business with a website: www.HermanCreativeStudios.com. In the beginning, I sold my flags and my book for money for PKD and to raise PKD awareness. But I needed more items to bring attention to the website and to PKD. So I started making coffee tables, garden tables, benches out of only refurbished wood and nails. Recycling is fun, challenging, and allows me to build things for very little cost which meant more money for finding a cure. The ultimate goal.

I use Offerup, Craigslist, Facebook, Nextdoor, and a few other sites to offer my products. When I began to tell people in the ads that I was doing all this to find a cure for this insidious disease because I gave it to my daughter, Kaley—who’s already had brain surgery when she was five due to PKD—people responded even more. Buyers will purchase something that costs $75 and they will give $100 and say they want to help find a cure!

PKD Awareness and Political Action

Recently, I became active in local politics, using my flags to help fundraise for our city council, mayor, and congressional district. And yes, they’re already hearing about polycystic kidney disease and the great need to find a cure. In fact, one of my wooden American flags just had a winning bid of $500! I usually sell them for $75 to $100 (and I’ve shipped them all over the United States).

Raising PKD Awareness as a Family

Always active despite my health, I wrote my first book. Naked in the Middle of a Tornado is about my family’s ongoing fight against PKD to bring awareness. It was self-published and is listed on Amazon and other websites. Along with writing, we became active in the PKD community. Linda is the Portland PKD Chapter Coordinator. We’ve promoted the Walk for PKD on live TV, participated in local PKD quilt making, and volunteered for the National Kidney Foundation.

Both my daughter, Kaley, and I have participated in various clinical trial studies. Kaley recently was selected as one of five recipients to receive a Torch Award by Sanofi Genzyme. The award recognizes individuals who’ve made significant contributions to the Lysosomal Storage Disorder (LSD) community and a $5,000 donation will be made to the PKD Foundation with her award.

Through the Fundraise Your Way program, patients and families can create their own DIY fundraisers just like Rob. All it takes is a little creativity and passion. Simply choose how your fundraiser, set a donation goal, and establish your own fundraising page through our user-friendly platform. In supporting life-changing research and raising awareness of PKD, the only limit is your imagination. To get more ideas for fundraisers, check out this other interview on the blog!