Fighting kidney diseases at the Josh Billings RunAground
PITTSFIELD — At Sunday's Josh Billings RunAground triathlon, there will be over 400 teams competing, hundreds of volunteers helping out,and more than 20 of something not many people will think about until they're needed.
According to race director Patty Spector, Yankee Restrooms supplies the Josh with around 20 portable toilets throughout the course.
"People with healthy kidneys don't usually think about their kidney function until they `gotta pee.' For those with kidney disease, peeing is something they hope they'll always be able to do," reads the opening line of a fundraising flyer developed by iron man Robert Gyurjan, an 11-year Berkshires resident who originally hails from Hungary.
Gyurjan has lived with Focal Segmental Glomerulosclerosis, (FSGS) a disease that causes kidney-breakdown and can lead to kidney-failure, for 10 years.
Dealing with FSGS had just become a part of Gyurjan's life, so much so that it became a common topic of discussion with his co-workers at Berkshire Gas. One such co-worker, Margaret DiMouro a 15-year resident of the Berkshires, was able to empathize more than most.
"We started talking about our mutual dealings with kidney disease right after he was diagnosed," DiMouro said in a recent interview with The Berkshire Eagle. "When he first found out, and my experience with my husband being sick, Robert just had a lot of questions."
The DiMouros have battled kidney disease on the front lines more than any family should have to. DiMouro lost her husband, Henry, to Alport Syndrome in 2006. He had also lost two other siblings to the disease, and has a sister living with a transplant. With Margaret learning to do the procedures and treatments, Henry, who had two kidney transplants, at one time held the unfortunate record of the longest-living patient on dialysis at 35 years. Now, all three of Margaret's daughters; Rachel, Dottie and Sami, are dealing with the hereditary syndrome.
"Two different diseases, but a lot of similarities," said Gyurjan. "The thing about them, is that at this point, neither of these diseases are curable. You can't just take a pill. There are certain medications to treat the kidney failure, but there's nothing to treat and prevent it."
When Rachel's daughter, Allie, 6, was diagnosed with Alport two months ago, it was Gyurjan's turn to empathize. A life-long athlete and veteran of four Josh Billings races — one as an iron man — Gyurjan chose to take action the best way he knew how.
"It was really when my granddaughter was diagnosed, just two months ago, that it drove him to do the Josh as an iron man," said DiMouro.
He and the DiMouro family created the "Gotta Pee!" Team to help raise funds throughout Gyurjan's training and competing in the 2018 Josh Billings race. The funds will be split between NephCure Kidney International and the Alport Syndrome Foundation, with the target goal of $10,000 donated to each organization.
"I knew if I just did the kayak part, like I was going to, it wouldn't be enough for fundraising," said Gyurjan. "So I started training, and that whole nine yards."
The fundraiser will be hosting a pair of dine-to-donate events, first today at Patrick's Pub in Pittsfield. The second event will be after the Josh, on Sept. 20 at Ozzie's Steak & Eggs in Hinsdale from 5 to 8 p.m. The Patrick's event will run from lunch through the evening and include take-out. Both events will also have a 50:50 raffle. Donations can also be sent directly to https://give.nephcure.org/Nephletes/GottaPee
and http://alportsyndrome.kintera.org/onlinefundraising/gottapee. All donations are tax deductible.
The DiMouro family will also be hosting a table near the Tanglewood finish line, accepting donations and cheering Gyurjan up the final running leg of the triathlon.
The money is only a part of this team's goals, the other is simple awareness. Which, while seemingly obvious, is perhaps more important than the donations towards finding a cure.
According to DiMouro, there are medical trials ongoing, which her daughters are attempting to be active in. But those trials need ongoing funding through the multiple phases.
"Timing is everything. I just finished a year-long treatment on an immunosuppressant that didn't work. My doctor just, three days ago, ordered a hormone that I'm going to start for six months, and that may not even work. I think I'm the third or fourth patient trying this method," said Gyurjan, who jokes about being a crash-test dummy.
DiMouro has been dealing with Alport in her family for 40 years, and the family has been a ground-zero supporter of the still-young ASF.
"Really it was patients teaching patients about the disease, because doctors don't really know that much about it," said DiMouro, who's granddaughter visits a nephrologist in Worcester.
"It's very similar to FSGS. They just had their first conference in Montreal this past summer," said Gyurjan. "And they raised like $150,000. It's all patients and families and doctors talking and sharing. And it's all ages."
A major issue with both diseases is how difficult they are to diagnose. While trying to avoid being graphic, Gyurjan describes how easy it is to live with the disease unrealized until it is too late. In essence, with all the hydration going on at the Josh this weekend, people should take note of how things are flowing out.
"People will tell me, 'oh I'm so healthy, I haven't been to the doctor in 10 years,'" said Gyurjan. "But if you own a car and don't change the oil or fluids, it's going to take a long time to fix it. Who knows how many people are walking around with this and not realizing it until it's too late and they lose their kidneys."
Every day is different for Gyurjan and DiMouro's family, but having the Josh there as a goal has given their minds and his body something to strive towards.
"My doctor always says, 'you look good.' And I think that is because of the exercise," said Gyurjan. "It's the whole Josh family, the motivation, getting out there. I might be doing better than other patients because of that."
Mike Walsh can be reached at email@example.com, at @CLNS_Walsh on Twitter and 413-496-6240.
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