Sept. 20 event to help fight little-known genetic disorder
By Geoffrey Wertime, Staff Writer
ROBBINSVILLE — Raising money can be hard when it comes to combating well-known medical problems. It becomes all the more difficult when the cause is polycystic kidney disease, which, despite affecting one in 500 people, occupies little space in the public consciousness.
Stacey Trzesinski, 32, of Andover Place, grew up on Fairfield Road in East Windsor. Six years ago it was discovered that her father, Paul, suffers from what is by far the most common form of the life-threatening genetic disorder, autosomal dominant PKD, or ADPKD. Since that time she has become a champion for the cause, and this year is organizing the Central Jersey Walk for PKD on Sept. 20 in its new location in Jackson.
Ms. Trzesinski said that like her sister, she does not know if she has the disorder, which has affected both her father and grandfather. While there is a 50 percent chance that she has inherited PKD, she said she has not undergone the test “because there’s nothing you can do about it even if you know you have it.”
Polycystic kidney disease is a genetic disorder that causes cysts to grow on a person’s kidneys, according to the PKD Foundation, which sponsors the walks across the country. PKD comes in two forms, ADPKD, which she said generally shows up by a person’s 30s, and the much rarer autosomal recessive, which strikes early and has a high mortality rate in the first month of affected children’s lives. There is no cure for either type of the disorder, which can enlarge kidneys considerably and cause high blood pressure, chronic pain, kidney stones, and a number of other difficulties, according to the foundation. The only treatments for kidney failure are dialysis and kidney transplants.
Ms. Trzesinski said her father “lived a normal life” until six years ago, when he began undergoing dialysis.
”Over the years, his kidneys started to fail but it didn’t really affect much” besides his energy level, she said, until eventually he needed a transplant.
He recently received a new kidney, but while his body did not reject it, “it just didn’t work right,” Ms. Trzesinski said, and he is expected to receive another transplant soon.
While Mr. Trzesinski inherited the disease, about 10 percent of those with PKD have no family history, instead acquiring it through a spontaneous mutation which can occur in a number of genes, according to the PKD Foundation. The disorder affects 600,000 people in the country and 17,400 in New Jersey alone, which is more than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined, according to information from the foundation.
The statistics belie the public’s knowledge of the disease, which is surprisingly limited when compared to other disorders that affect a smaller percentage of the population.
”I think part of it is because it’s not a visual disease,” Ms. Trzesinski said. “You could walk past someone and have absolutely no idea that they have it.”
She added that many sufferers and their families are unwilling to talk about the disorder, while others who have it remain unaware because it affects some of them later on in their lives.
One purpose of the two-mile, noncompetitive walk is to increase awareness about PKD, and the other is to raise funds for research to find a cure. Open to all ages, this year’s goal is to get 200 to 300 walkers and raise $30,000, considerably higher than last year’s take of $18,000 when the walk attracted 120 participants. So far, Ms. Trzesinski said, donations are about 46 percent of the way there, but many walkers are expected to bring their donations with them and sign up on the day of the event.
”Some people said I was being too optimistic,” she said. “I figure if you don’t have something to shoot for, what are you doing? I like to think big.”
In years past, the New Jersey chapter of the PKD Foundation has held the walk along the coast in Seaside Park, but Ms. Trzesinski said she moved the event to Jackson this year in order to make it more accessible.
She found the location of Jackson Premium Outlets after months of searching for a venue that was free the weekend all the foundation’s walks are to be held. She said a number of stores had already said they would help out with volunteering and donated items, and that if all goes well, she hopes to return there next year.
This is the first year organizing the walk for Ms. Trzesinski, who has a master’s degree in arts management and has worked with nonprofit organizations, currently doing marketing for the New York Philharmonic. In addition to her work experience, she has spent a number of years participating in the event, which is planned solely by volunteers. She said with her background, “it seemed like a natural fit for me to be the one.
”And I kind of got the sense that if I didn’t do it, it might not happen,” she said, “so I decided to go for it.”
The Central Jersey Walk for PKD will begin at 9 a.m. Saturday, Sept. 20 at Jackson Premium Outlets, 537 Monmouth Road, Jackson. Registration will open at 8 a.m. To register or donate to the walk, or for more information, visit www.pkdcure.org/CentralJersey, or call 1-800-PKD-CURE.

