Published on June 21, 2022 | A PKD patient, advocate, and PKDF volunteer, Glenn Frommer organized the RideForPKD to raise $500,000 for PKD research. On May 1, Glenn Frommer kicked off his journey across the country. And after nearly two months on the road, we’re checking in with him to hear the highlights and challenges of biking for a cause.
How has this first part of your RideForPKD journey been?
Glenn: The first quarter of the RideForPKD has been an amazing experience. So far, we’ve completed 25 days of riding, totaling 1,437 miles of riding and 68,000 feet of climbing over 90 hours in the saddle. The highs have been phenomenal: meeting researchers at University of California Santa Barbara (UCSB) and University of Southern California (USC), having successful fundraising events, meeting new donors in diners and campgrounds, riding with friends (both old and new), closing in on our fundraising goal, and seeing some of the most beautiful parts of the country in California, Arizona, and Utah.
We’ve also faced challenges along the way as well. With the RV, logistics, road conditions, and weather conditions all presenting interesting obstacles that my wife Beth and I have had to overcome. On balance, the opportunity to help build our community and raise money for the PKD Foundation’s research program have far outweighed the hurdles we’ve encountered.
Glenn Frommer and Dr. Weimbs at the University of Santa Barbara
What highlights have you had so far?
Glenn: From a riding perspective, riding the Pacific Coast Highway from San Francisco to Newport Beach and riding into and through the Grand Canyon have both been incredibly beautiful, awesome experiences. More importantly, the meetings we had with Dr. Weimbs and his teams at UCSB and Santa Barbara Nutrients, with Dr. Chung and her team at USC, and the great fundraising event we had at the beautiful home of our friends’ in Irvine, California were definite highlights. It gave us a chance to hear about new and promising research programs as well as sharing our message and raising awareness of PKD in the broader community.
Lance Armstrong and Glenn
I had a great meeting with former professional road racing cyclist, Lance Armstrong, during a stop in Aspen, Colorado. I was inspired by Lance’s success with Livestrong, where he leveraged his passion for cycling to raise money and awareness for cancer, to do the same for PKD. As a result, Lance was generous with his time and energy to discuss the RideForPKD.
Lastly, we’ve met phenomenally caring and charitable people along the way. I met 12-year-old Linkin, a member of the Navajo Nation, in a motel courtyard in Cameron, Arizona. He gave me five, single dollar bills and told me that I needed it more than he did. I met Tim and Tiffany from Dallas—at a campground in Williams, Arizona—who, within 15 minutes of meeting Beth and I, decided to generously support the cause and made a donation on the spot. And I’ve met countless people in diners and RV campgrounds who saw our banner on the side of the RV, and gave $20, $50, or $100 bills to our cause. I’ve been blown away by people’s caring and generosity.
You were able to stop in Los Angeles to meet with the PKD community and local PKD researchers. What was that experience like? Did you learn anything new?
Glenn with researchers at the Weimbs Laboratory
Glenn: There were three main takeaways from our time with the research teams at UCSB and USC.
- Learning about research programs.
- Introducing the researchers to PKD patients, like me, who are hoping to benefit one day from their important efforts.
- Thanking the researchers for their tireless work to better understand the causes and develop potential treatments to help our community.
The work at UCSB to understand how altering the biochemical environment in our bodies can retard, and even reverse, the growth of cysts is exciting, making our bodies less hospitable to cyst growth. The work as USC, a novel mRNA approach to improve the delivery and effectiveness of existing drug therapies, appears to be a potential winner by taking drugs that work well in rodent models and figuring out a way to deliver them in a targeted and concentrated form to our kidneys without causing side effects in other organs.
And as impressive as the technical work is, the passion of the leaders and researchers at the labs is truly inspiring to our community. It gives us hope that one day there will be more effective treatments and a cure to #endPKD. I found it interesting that all of the researchers told me that they often don’t have a chance to meet patients like me, so I would encourage others to connect with their local research universities to make a personal connection.
What’s been the most challenging part of the RideForPKD so far?
Glenn: On any given day, there are 1,000 moving parts to having a successful day: RV, campgrounds, logistics, roads, weather, bikes, supplies, fundraising, digital tools, and merchandise. While 99% of these parts are fine, the 1% of parts that don’t work well means that we’re dealing with many challenges every day. We’ve dealt with RV issues, campgrounds not having space, unexpected road closures (for 100s of miles), horrendous desert heat and vicious 50-mph crosswinds, no shoulders and rude drivers, bike malfunctions, and days on end without cell or Wi-Fi service. We’ve learned from every experience and not allowed the challenges to distract us from our mission to support the PKD community.
Glenn with Emily and Justin Strauss
What are you most looking forward to in this next leg of the RideForPKD?
Glenn: As we exit the beautiful Southwest and head through the mountains of Utah and Colorado for the next quarter of the RideForPKD, I’m looking forward to both the natural beauty of our country and the great events we have planned in Colorado. We’ll ride with dozens of friends, have a homecoming with our local friends in Vail, Colorado, and we’ll meet with researchers and the local Denver Community of the PKDF at CU Anschutz Medical Center. The month of June will be full of great events leading into our ride to Kansas City in early July. Once in KC, we’ll have multiple meetings at the PKDF headquarters and at KUMC where we’ll be joined by local members of the KC Community and congressional representatives.
I’m also looking forward to surpassing our initial fundraising goal of $500,000 and raising even more funds for the Foundation. There are so many ways members of the PKD Foundation can support us. We have great RideForPKD merchandise on sale, people can make a donation, or you can look at our schedule and meet us for an event or to ride. The second month of the Ride promises to be every bit as epic as the first. Follow us on our social pages for daily video updates and weekly recaps.
My thoughts & prayers are with you all the way. Not many people know what PKD is, youi have opened a lot of minds. Safe travel Glenn.