RideForPKD: Part I

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Published on April 19, 2022 | When it comes to polycystic kidney disease, we all want to feel like we’re making a difference. Some of join clinical trials, others volunteer with the Walk for PKD or serve as peer mentors. But Glenn Frommer had something big in mind. A PKD patient, advocate, and PKDF volunteer, Glenn decided to channel his love for cycling into a fundraiser. Biking from coast to coast, he’s embarking on the RideForPKD on May 1 to raise $500,000 for PKD research.

 

Tell us a little about your journey with PKD.

Glenn: In 2015, I was diagnosed with PKD as a secondary finding of an MRI for a back injury. Like many of us, I had never heard of PKD. Neither of my parents had PKD nor did I have any other family history of PKD. Previous regular annual physical exams and blood tests showed my creatinine and eGFR levels were in “normal” ranges. However, I did have elevated blood pressure, which I now know is an early warning sign of PKD. But I didn’t originally connect to our disease.

While I have the disease, I consider myself fortunate as I receive excellent medical advice from Dr. Edelstein and his team at CU Anschutz Medical Center in Denver. I stay very active, and am a vegetarian who makes healthy nutritional choices. Unfortunately, we know that a significant portion of the 600,000 Americans currently afflicted with PKD don’t have access to the same great healthcare and support that I do. I’ve seen how awful this disease can become —kidney failure, dialysis, and even death—and I’ve witnessed friends suffer without a cure. While my kidneys are three times the size of normal kidneys, through exercise, excellent medical advice, and a good nutrition program, I’m confident I can remain healthy enough this summer to accomplish the goal of riding across America.

How did you find the PKD Foundation?

Glenn: When I learned I had PKD, I did preliminary internet research (what did we all do before the internet) and learned about the Foundation from my nephrologist. The Foundation’s website is full of great information and useful resources and houses the ADPKD Registry, which allows our community to better understand the practical and real-world implications of having our disease.

 

What made you get involved with the Foundation?

Glenn: In 2018, I retired from my career running large multi-national companies and wanted to uncover a new “purpose and meaning” for my life. Through a “Life Planning” process with a local life coach, I was able to clearly articulate my desire to pursue philanthropic endeavors. And I decided to get more actively involved in supporting the Foundation. I spoke to Andy Betts and Chris Rusconi who—based on my deep career in product innovation using Six Sigma methodologies—invited me to join the research grant review committee. It’s through this process that I came to understand that based on budget limitations only 10-20% of grant proposal requests made to the Foundation are funded. Additionally, it costs $160,000 to seed fund a research project to help to find a cure.

I decided to focus my energies on support for the PKD Foundation’s research program, as well as serving on the Advocacy Champions Network to advance our advocacy initiatives, like the Living Donor Protection Act, and additional research support from the NIH, NIDDK, and DOD. I realized through my time on the grant committee that the Foundation needed additional funds to support its research program and to help research institutions find a cure or medical options to support our community of hundreds of thousands of Americans who have PKD.

What is RideForPKD?

Glenn: My passion for cycling, my decades as a business leader, my experience investing in and supporting start-up businesses, and my determination to #endPKD, led to the creation of the RideForPKD with the objective of being an epic and significant fundraising event.

RideForPKD is a four-month, 5,300-mile bike journey across America this summer with the purpose of raising funds to support the PKD Foundation’s research grant program. There are three key objectives for the Ride. Firstly, to raise at least $500,000 for the Foundation’s research program. Secondly, to raise awareness of PKD. Thirdly, to build community. In addition to cycling an average of nearly 60 miles every day for 100 days, I’ll also be visiting a dozen PKD-specific research universities and video-blogging highlights on the exciting and potentially ground-breaking work they’re doing. Additionally, I’ll be connecting with dozens of local PKD communities along the route to meet fellow PKD patients, talk about highlights of the Ride, and provide insights that I have acquired during my time on the road.

I am very impressed with and thankful for everyone at the PKD Foundation. I want to give a special shout-out and thanks to Andy Betts, Carmen Gleason, Sue Full, Danielle Rose, and Krystn Kuckelman for their ongoing support.

 

Learn more about the RideForPKD and how you can get a jersey like Glenn’s at www.rideforpkd.org.

Can you tell us about the kick-off of the RideforPKD?

Glenn: I will be starting my ride on Sunday, May 1 from the Golden Gate Bridge in San Francisco and finishing 18 weeks later on September 2 in Cape Cod, Massachusetts. On April 16, two weeks prior to the start, we’re having a kickoff concert event in my hometown of Vail, Colorado. It’ll bring together family, friends, sponsors, donors, and anyone who wants to join as a celebration and fund-raising event. We will have music by The Cheeks (who will also be performing at the Electric Forest Music Festival in Michigan, and incidentally two of the band members are my sons!), food and drinks, and some great silent auction items, including vacation home rentals, sports tickets and memorabilia, rounds of golf, restaurant gift cards, artwork, jewelry, ski and bike equipment, and much more. The auction will be live and online so people from around the country can also join.

Tickets to the event and information on all the auction items are available on our website.

 

 

Can others get involved with RideForPKD? 

Glenn: There are two primary ways that people can get involved to support the Ride. First, please sign up to ride with us. Whether you want to ride 20 miles or 500 miles, review the interactive RideForPKD route maps on our website and fill out the contact form to let us know what segment or segments (as indicated by the starting and finishing towns) you’re interested in tagging along for. The Ride is open to all cyclists and, while the Ride is mostly self-supported, we will be providing turn-by-turn directions, will carry your gear, and will provide details of all food stops, hotels, campgrounds, and bike shops along the entire route.

Beyond inviting cyclists to ride along with us, we also need volunteers to help us while we’re on the road. This includes driving for the RV (only a non-commercial driver’s license is required), driving the support vehicle, coordinating visits with local Foundation communities, hosting local fundraising events, arranging for local press coverage, and more. For more details and ways to register, visit our volunteer website.

 

What are you most excited about with RideForPKD?

Glenn: I can’t wait to get on my bike on May 1 and start pedaling, not only to continue to raise much-needed research funding but also to raise awareness for PKD and build our community. Meeting researchers and PKD patients in the field will likely be some of the most rewarding parts of my journey.

I am humbled by the fact that to date we have already raised over $350,000 from nearly 400 individual donors. And I’m confident that we’ll reach our goal of raising at least $500,000 for the PKD Foundation. I want to acknowledge and thank our 35 current sponsors including: RBC Wealth Management, pkDO, 28Freight, Bank of Colorado, Milkbox Partners, Palladio Biosciences, Goally, VAREco, Bridge of Life, City National Bank, Domino’s Pizza, Grossman Wellness, quip, Fruition Partners, Regulus Therapeutics, Murray & Stafford, Riemer Communications, TLD Group, and dozens of others. From what was just an aspirational idea less than a year ago, it’s great to see so many individual and corporate donors getting behind this cause.

 

How else can the PKD community support the Ride and its goals?

Glenn: There are a few different ways.

  1. Improve your understanding of polycystic kidney disease with the resources on pkdcure.org.
  2. Get involved in clinical trials. Only we (PKD patients) can help researchers study PKD.
  3. Sign up for the  ADPKD Registry. Your personal experience with PKD can help researchers better understand how to cure it.
  4. Advocate with your local congresspeople for more funding for PKD research.
  5. Follow the RideForPKD on all social media sites using #RideForPKD or @RideForPKD.
  6. Share the RideForPKD website with your friends and ask them to support us.
  7. Volunteer, ride, sponsor, or donate to the PKD Foundation on behalf of RideForPKD.

 

Anything else you’d like to add?

I want to thank my wife Beth, who has been my rock throughout my entire PKD journey. I know she’ll be by my side every day of the RideForPKD. She will be driving an RV from campsite to campsite and managing the complex logistics of the Ride every step of the way. I couldn’t do this without her love and support. And a big thank you to our volunteer staff who are helping me with all the logistics, marketing, fundraising, event coordination, and everything else I will need over the next 120+ days on the road. The RideForPKD has been a herculean undertaking and the team’s support is critical to its success. Thank you to all the donors—both large and small, and some of whom I don’t personally know—who’ve stepped up and dug deep into their pockets to support this 60-year-old cyclist with PKD for an extremely worthy cause.

 

Follow Glenn’s journey across the country on Instagram or his website.

2 Comments

  1. Amy Riemer

    Fantastic article and what an inspiring story! Go Glenn!

    Reply
  2. Olufunke Ojuri

    That’s fantastic! Will tune in as you #rideforpkd. Sending blessings for the road ahead!

    Reply

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