After This Cyclist Was Diagnosed With an Incurable Disease, He Started a Charity Ride to Fund Research

·9 min read
Photo credit: Courtesy Glenn Frommer
Photo credit: Courtesy Glenn Frommer


"Hearst Magazines and Yahoo may earn commission or revenue on some items through the links below."

Name: Glenn Frommer
Age: 60
Hometown: Vail, Colorado
Occupation: RideForPKD Founder / Milkbox Partners CEO
Time Cycling: 30 years as a roadie
Reason for Cycling: I started cycling for fitness and quickly realized that it fulfilled my desire for the 3 Cs—cardiovascular, camaraderie (group rides), and caffeine (at our mid-ride stops!) and it’s a great way to see the world. Thirty years later it has kept me fit, allowed me to meet great friends, taken me to beautiful spots around the world, and given me the chance to help the polycystic kidney disease (or PKD) community by creating RideForPKD.

In the early 90s, I moved to Southern California and bought a hardtail Gary Fisher mountain bike. My new friends out there convinced me that I didn’t need suspension, which my butt quickly realized was bad advice—for trail and around-town riding. Around that time, a friend of mine was doing a ride from Newport Beach to San Diego to support multiple sclerosis, so I decided to join and was hooked by the inherent beauty of cycling the Pacific Coast Highway.

A few years later I moved for work to London and met a group of cyclists who do the L’Etape de Tour, which each year opens up one mountain stage of the Tour de France for 8,000 amateur riders to test themselves against the likes of Alpe D’Huez, Col du Tourmalet, Mont Ventoux, and other classic stages. So I agreed to train and join them. I was immediately hooked on climbing big mountains, mostly because I love going downhill fast!

That passion has stayed with me over the past couple of decades and my wife, Beth, has now become a very strong roadie as well, so we can ride together in great spots across the country.

When I first started to ride I was nothing more than a weekend warrior, riding on Saturdays and Sundays for 150 to 200 miles in total. And as my wife will tell you, I was always getting back home much later than I promised her. I joined the Princeton Freewheelers, a large cycling group in central New Jersey. There was no racing, but I did continue to fly to Europe for one week each summer to do stages of the Tour de France and the Giro d’Italia.

Then, in 2014, my health changed. I was diagnosed with polycystic kidney disease, or PKD. It is a genetically inherited, untreatable, incurable, progressively worsening disease that is programmed to uncontrollably grow cysts on one’s kidneys until they choke out kidney function, with dialysis and transplantation ultimately becoming the only way to survive. I got the diagnosis after a secondary finding of an MRI for a back injury and had never heard of PKD before, despite the fact that 600,000 Americans currently have the disease.

While I am fortunate to still have adequate kidney function at the age of 60, I have struggled with high blood pressure, had two hernia surgeries, and know that my kidneys are three times their normal size with more cysts growing larger every day.

I am currently on a cycling journey across the U.S. to raise money for the PKD Foundation. I created the charity called RideForPKD to try to make lemonade out of the lemons that represent a PKD diagnosis, and not take it lying down. There are three main purposes for the ride:

  1. To raise awareness of the disease and to help others who may have symptoms to understand their options.

  2. To reinforce the foundation of the PKD community by meeting with research institutes and chapters of the PKD Foundation all across the country to bring the latest developments and hope to our community.

  3. To raise more than $500,000 to support the PKD Foundation’s research program to better understand and develop treatments for PKD patients.

My decision to create this movement was born from the cross-section of my love of cycling, my commitment to philanthropy to help others, and my confidence that my network of friends and family would support—emotionally, physically, and financially—the fundraising and logistical challenges. And they certainly have!

The RideForPKD is a 5,300-mile route covering 18 States and more than 215,000 feet of climbing. It is not a straight shot across the U.S., but instead a carefully planned route that hits as many of the big towns and cities where PKD research universities and/or PKD Foundation chapters are located so that we could most effectively fulfill the mission. The Adventure Cycling Association was kind enough to sponsor the ride and provide printed and digital maps that we pieced together to create the ride’s route.

We planned to keep each day at less than 60 miles or 3,000 feet of climbing—though some days are longer—so that I have time to connect with local PKD-related people and do fundraising events. Since we live in the Rockies where there is snow on the roads from November until March, I trained for the RideForPKD by cycling 90- to 180-minute controlled sessions on my Peloton five to six days each week all throughout the winter. After leaving behind countless puddles of sweat over that six-month period, I am ready for the arduous task of cycling 100 days across our beautiful country.

When I’m cycling, I’m not thinking about any of life’s other stressors but very much focused on the moment, and that provides great mental and psychological benefits. On the physical side, when I first started cycling in the early 90s, I was 30 years old and weighed 165 pounds. After 30 years of cycling and now at age 60, I am 157 pounds and—outside of the ravages of PKD—am in good general health, and I give cycling all the credit for this.

I’d encourage every cyclist to think about how they can leverage their passion for riding with a purpose to help others. Whether it’s joining a great charity ride like the Tour de Cure or Bike MS, or starting your own charity to raise money for a cause you believe deeply in, leverage what you love doing to help others. It’s incredibly rewarding.

These three tips have made my cycling journey a success:

1. Start an evening stretch routine

The RideForPKD was planned to average around 60 miles and/or 3,000 feet of climbing (whichever came first!) for 100 out of 120 days as we cross America. So I need to respond enthusiastically to the morning alarm every day!

Before I go to sleep each night I run through a 15-minute yoga pose stretching routine to loosen up my back, shoulders, quads, hamstrings, and calves. By doing so, I wake up physically loose and ready to attack the day’s challenges, whatever they may be.

2. Alternate saddle time with standing time

Two big challenges that all cyclists have is leg fatigue and saddle sores, and I find alternating sitting and standing positions on the bike, as well as changing hand position regularly, keeps my legs and tush feeling fresh even after many long days in the saddle. I try to stand for 50 pedal strokes once every 2 miles, regardless of whether I’m climbing or on the flats.

3. Define your fueling and hydration strategy

Spending four to five hours every day on the bike requires some good discipline for fueling and hydration—not something that I necessarily focused on as a weekend warrior, but which the RideForPKD has brought into focus for me.

I need to consume 4,000 calories a day and, as a profuse sweater (I lose around 2 pounds of water per hour), I need a 24-ounce bottle of electrolyte-infused water every 45 minutes, especially in the 95- to 110-degree temperatures. My bike is outfitted with four water bottle cages, so I always carry plenty of water and always stop at convenience stores for refills if any one of those bottles is empty when I pass by.

For food, I always eat a big carb- and protein-heavy breakfast, and then eat 100 calories every 30 minutes. That includes things like a banana, apple, ½ of a Clif Bar. This keeps me fueled throughout the ride. I also have 30 to 50 grams of carbs every 30 minutes for three hours after the ride is over.

Glenn’s Must-Have Gear

Garmin Radar Tail Light: This is the best piece of safety gear I have ever owned, as it provides eyes in the back of my head while I’m riding on shared roads. I would never leave home without it.

Garmin Edge 1030: I’ve been a big fan of Garmin products, and I recently upgraded to the Garmin Edge 1030 with the integrated headlight (super bright with great battery life) and integrated tail-light with a built-in radar. This system is terrific and the radar gives me the confidence to cycle on roads with heavy traffic knowing that I’m always going to be aware when a vehicle is behind me and how quickly it is approaching.

NutriSense Continuous Glucose Monitor: Metabolic health is important to all of us, and monitoring and managing your blood glucose and understanding your insulin response is the key to metabolic health. As an athlete, and also as someone with a kidney disease, I wear this continuous glucose monitor and work with the NutriSense nutritionists on a regular basis to understand how different foods, exercise, sleep, and stress impact my insulin response so I can adapt my habits for better health.

Ventum GS1 Gravel Bike: I’ve been riding road bikes for the past 30 years, but noticing how bad the roads have gotten, even if paved, and how much more I can explore with a gravel bike, I went with a gravel bike. So even though 90% of the RideForPKD is on paved roads, I’ve been riding my lightweight carbon fiber Ventum, which I ordered straight from the manufacturer, on more than 50% of the days to deal with rough road surfaces. My body feels great no matter how bad the roads get, and it handles just as well as my road bike.

Skratch Hydration Drink Mix: I really like Skratch as my go-to electrolyte mix. I tolerate it very well—never had even a hint of stomach upset—and feel great and strong even on the longest and hottest days when I’ve got Skratch in my water bottles.

We want to hear how cycling changed you! Send your story and submit your photos to us via this web form. We’ll pick one each week to highlight on the site.

You Might Also Like