Schaumburg mom’s mission is to find cure for son’s rare condition

It’s a Schaumburg mother’s mission to find a cure for a rare disorder that affects her son and only about 500 other children throughout the world.

Swapna Sasidharan has started the Cure POGZ Disorders Foundation, assembling a scientific advisory board composed of medical and academic experts and launching a fundraising apparatus to generate the needed capital for a gene therapy.

Her 9-year-old son, Ved, was diagnosed with the rare POGZ gene mutation in 2023 — a discovery that came after hundreds of labs, tests, therapies and doctors visits.

Ved has severe cognitive impairment and is unable to speak or comprehend what he sees and hears. Since age 5, he has been able to walk, but is wobbly and needs assistance. He also has gastrointestinal issues and experiences cyclical vomiting, his mother says.

He can’t attend school, but does receive daily physical, behavioral, occupational and speech therapy.

Development of a treatment or cure would give Ved and other kids like him “a chance at a fuller life,” Sasidharan said.

“We are trying to get ahead of this. There are parents who are leaning on me to do something about this,” said Sasidharan, a business growth strategist in the health care industry who has lived with her family in Schaumburg for 20 years. “The hard part is science and technology exists. It’s just that nobody wants to fund this, and it’s a huge amount.”

It could cost $5 million to $7 million just for research and development before a pharmaceutical company would get involved and pursue clinical trials, Sasidharan said.

The fact that the condition is so rare means there’s no economic incentive for drug companies to jump in right away, she says.

But she notes that research on POGZ-Related Syndrome, also known as White Sutton Syndrome, would advance scientific advancements to treat more common conditions like cancer and Alzheimer’s disease.

Sasidharan and her team of 10 involved in the nonprofit are trying to get their message out through various channels, including networking events, social media and online fundraisers on GoFundMe and Givebutter.

“We are trying to get out there as much as possible so people see us and reach out to us,” she said. “We have to try every single possible way, because the kids’ lives are dependent on this.”

To donate, visit gofundme.com/give-ved-a-chance-at-a-fuller-life, givebutter.com/cureforved, or curepogzdisorders.org.