LI group helps prevent genetic kidney disease from reaching next generation

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One year after launching an effort to help ensure that polycystic kidney disease (PKD) is not passed down to future generations, the Westbury-based PKD Outreach Foundation (pkDO) is making strides.

Recently pkDO announced that it has more than 100 families in its grant registry for its 100 PKD-Free Babies initiative, which aims to prevent future generations from suffering from one of the leading causes of kidney disease.

More than half of the families enrolled in the registry are actively pursuing having PKD-free children. In addition, 10 families are expecting, or already have PKD-free children, thanks to the organization’s support, according to pkDO.

The foundation said that it also secured partnerships with eight different medical centers and hospital systems across the United States, and there are discounts for pkDO grant participants with US Fertility and other fertility centers nationwide for efforts that include preimplantation genetic testing.

“As we reflect on the past year, we are proud of the success we have achieved in such a short time. Our progress is a testament to the dedication of our small team, the PKD community, volunteers, ambassadors and participating families,” Richard Kellner, pkDO founder, said in a news release about the recent milestone.

PKD is a genetic condition that affects over 600,000 people in the U.S. alone and is one of the leading causes of kidney failure. There is no cure, and PKD and has a 50% chance of being passed onto future generations, according to pkDO. Every year, 7,500 people are born with PKD, which is about one in every 500 births.

“Moving forward we are dropping the ‘100’ from our PKD Free Babies program.  We will not stop until PKD is eliminated,” Kellner said. “We urge everyone to continue to assist us to raise awareness and let people know that there is a solution for PKD and we have grants available to help families have PKD-free babies. Together, we will end the pain and heartbreak this disease brings and will create a world free of PKD.”

The foundation is committed to sharing the solution for ensuring that future generations can live happy and healthy lives, instead of dealing with the pain and suffering caused by PKD. Through programs and initiatives, pkDO provides families with grants and discounts at top fertility centers across the country. Grant programs have been expanded in recent months to support not only preimplantation genetic testing but also invitro fertilization.

The organization also aims to help increase live kideny donations and slow the progression of PKD in young adults.