for kidney disease researchCorrespondent
Group battles PKD
one step at a time
Brick woman helps organize 5K walk to raise funds
for kidney disease research
Correspondent
Tammy Pausz was only a child when her mother was diagnosed with polycystic kidney disease (PKD), a serious and life-threatening genetic illness. And now, after seven years of dealing with her own diagnosis of PKD, Pausz, a Brick resident, is trying to help others afflicted with the same condition.
Pausz is now a member of the New Jersey Chapter of the PKD Foundation, an organization dedicated to raising awareness and money through research and legislation for treatments and cures for those suffering with the disease.
Come this fall, the New Jersey chapter will hold its third annual 5K Walk for Polycystic Kidney Disease on Sept. 21 at Liberty State Park in Jersey City.
With each year, members and participates of the annual walk come closer to reaching the goals of the PKD Foundation.
Last year, the New Jersey chapter of the PKD Foundation was the most successful chapter in the country, Pausz said, raising enough money to give a research grant to the foundation.
But despite the success of the New Jersey chapter and the foundation, millions of Americans still suffer from this debilitating and sometimes deadly disease.
"There is no treatment and there is no cure," Pausz said. And unfortunately, Pausz said, the disease is not something many people know about.
According to the PKD Web site, polycystic kidney disease is the most common life-threatening genetic disease, affecting more than 600,000 million Americans. The disease affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia combined, the Web site said.
PKD causes multiple cysts to form on each kidney, causing the mass of the kidney to increase, ultimately leading to kidney failure.
The disease, according to the Web site, manifests in two forms: the more common autosomal dominant polycystic kidney disease (ADPKD), affecting 1 in 400 to 1 in 500 adults, and autosomal recessive polycystic kidney disease (ARPKD), affecting 1 in 10,000 — usually in children, infants or newborns.
Sixty percent of those affected will need some form of treatment or dialysis, Pausz said. And there is a 50 percent chance of passing the disease along to your children, she said.
Pausz, who has two children of her own, understands the necessity for public awareness and more funding for a cure for the disease.
An important goal of the PKD Foundation is to spread the word on the seriousness of this disease, she said.
The lack of attention to the disease in the media, Pausz believes, may be due to the lack of well-known celebrities campaigning for funds or research.
And this lack of public awareness may be the reason behind the limited local resource groups for those suffering with PKD and the reason the PKD Foundation is the only foundation worldwide created to help those living with the disease.
"We are trying to form support groups in different parts of the state," Pausz said.
Pausz said she and others in the New Jersey Chapter are now ultimately trying to advertise and gain publicity for the upcoming walk in September.
Last year’s walk, Pausz said, had roughly 200 participants. The walk was small, but Pausz is hopeful more people will join this year.
Those who wish to contribute to the PKD Foundation can donate money directly to the foundation or sponsor a walker in this year’s event.
The PKD Foundation has annual walks for its chapters in various states. To register or volunteer for the New Jersey walk, call (201) 823-4498 or e-mail NJPKD@aol.com. For more information or questions about the event or the PKD Foundation, call Tammy Pausz at (732) 477-5464.