Avid cyclist Glenn Frommer finds himself on two different, yet related, journeys simultaneously.
First is his is journey from being diagnosed with polycystic kidney disease in 2015 to fighting the genetic disorder.
Second is his bicycle journey across America to raise awareness of the little-known, yet relatively common, ailment. In Great Bend Thursday and Friday, he is about halfway through his 5,300-mile odyssey from San Francisco, Calif., to Boston, Mass.
He started May 1 and hopes to be done by Sept. 1.
“I have PKD,” the 60-year-old Vail, Colo., man said, relaxing in his recreational vehicle after 60 grueling miles riding through the hot, wind-swept western Kansas plains. “I am trying to do something to help our community.”
This is not an “orphan disease,” he said. Although few have heard about it, 600,000 Americans have it.
In short, PKD causes multiple fluid-filled cysts to grow in the kidneys. These lead to the choking off of kidney functions, high blood pressure, renal failure and eventually death.
“There is no cure, there is no treatment. It worsens as you age,” he said. “The only options are dialysis, a kidney transplant or you die.”
Yet, despite the numbers, few national dollars find their way to researchers. This is why he bought an RV and convinced his wife Beth to set out on this trek – dubbed Ride for PKD.
“My wife has just been a tremendous sport,” he said. She drives the camper, makes sure Glenn is safe, and watches their dog Osi.
“I am a cyclist and I have this disease,” he said. This put him in an ideal spot to launch such an endeavor.
Sure, Glenn is selling merchandise and taking donations (they are well on their way to reaching their $500,000 goal). But, working with the Kansas City, Mo.-based PKD Foundation, he makes stops at research facilities like the University of Kansas Medical Center and lobbies lawmakers to loosen federal purse strings.
He also supports the Living Donor Protection Act that prohibits insurance companies from discriminating against donors.
“Most people die waiting for a kidney transplant,” and this would make the process easier, he said.
“I’m going to fight like hell to do everything I can to protect the functioning of my kidneys,” he said. This includes volunteering his time, energy, and money to help the PKD Foundation and its efforts.
For the multi-sport adrenaline junkie who trained for this, “the riding has been the easy part,” he said. More challenging than a Kansas headwind has been setting up the trip, planning the route, fundraising, marketing and finding sponsors.
Not to mention the days of meetings and political hobnobbing in places that will include Washington, D.C.
All of this made him appreciate crossing into Kansas from Colorado earlier this week.
“The nicest people in the country, hands down, are here in Kansas,” he said. “It is a different level of nice.”
Most drivers are courteous as he pedals down the highways. “Most even wave,” he said.
Also, Kansas roads are better than those in the other states he’s crossed.
Even so, “it’s lonely out there,” he said of riding solo. Others have ridden with him from time to time, but for most of the 100 days of riding through 18 states he’ll be by himself.
For more information, visit www.rideforpkd.org.