HomeSikh AmericansSikh American activist creates research initiative to cure her son's rare disease

Sikh American activist creates research initiative to cure her son’s rare disease

Sikh American activist and civil rights lawyer Gurjot “Jo” Kaur has launched Riaan Research Initiative to find a cure for her son’s rare disease.

Kaur’s son, Riaan, was diagnosed with Cockayne Syndrome Type II in March. The rare genetic disorder, according to the initiative’s website, originates from DNA transcription and repair failure; its devastating effects include neurodegeneration and vision and hearing loss. The average life expectancy of those who have the condition is five years, as victims often die of respiratory illness or kidney failure.

“We were horrified to learn that right around the time most other children excitedly begin elementary school, our sweet Riaan may face the end of his life,” Kaur and husband Richie DiGeorge wrote on the initiative’s website.

Consequently, Kaur partnered with doctors and other medical experts to create the New York City-based initiative, which aims to further research on treatments for rare diseases. According to the American Bazaar, its first goal is to raise one million dollars by December in order to fund a gene replacement therapy program for Cockayne Syndrome.

As AsAmNews reported back in April, the couple began setting up the foundation just days after learning of their son’s condition.

Research funding is a key aspect of finding viable treatments for rare diseases. The Bazaar reported that Riaan’s family found out that a lack of financial resources to pursue a cure for the disorder is the biggest reason that one does not yet exist.

“Any possible treatments for ultra-rare diseases like Cockayne Syndrome often remain neglected in the dustbins of laboratories and/or sit comfortably for decades as conceptual subjects of stale science papers,” Kaur told the Bazaar. “We’re going to change that.”

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