Fairfield Parents Started a Non-Profit to Raise Money for a cure for INAD

Fairfield Parents Started a Non-Profit to Raise Money for a Cure for Infantile Neuroaxonal Dystrophy (INAD)

By Jackie Schatell

When Ariya Panwala started having trouble sitting up, something she had once been able to do with ease, and her pupils suddenly started shaking back and forth, her parents Leena and Anil frantically took Ariya to her doctor to see what was wrong. One year, multiple specialist visits, and five genetic tests later, they finally got a diagnosis – and it was a death sentence. Ariya, who had just turned 2, at the time was diagnosed with Infantile Neuroaxonal Dystrophy (INAD), a fatal neurodegenerative disorder with a mutation on the PLA2G6 gene, affecting 1400 young children worldwide, shortening their lifespans to just five to ten years of age. Leena and Anil learned that Ariya would lose the ability to sit, she would never learn to walk or talk, and she would lose her sight, hearing, and the ability to move and be aware of her surroundings.

“We were shattered,” says Leena, who resides in Fairfield. “After doing research, we were disheartened to discover that there was very little research on the disorder, no treatments, no cure, and no clinical trials—there was nothing even available to stop the progression of the illness. In addition, there was no central group for parents to gain support and share information.” Leena and Anil decided that something had to be done to bring awareness to the disease and to support the community facing it. Thus, they created the INADcure Foundation (INADcure. org) and Ariya’s Wish (ariyaswish.org), a campaign to spread awareness and have people donate what they can to help raise the $7 million needed to treat children with INAD and potentially save their lives. Through the foundation, they have raised $150,000 so far and they have connected with other families whose children also suffer from INAD.

Over the last five years, the Panwalas and the INADcure Foundation have been laser-focused on finding treatments and a cure for INAD and other PLA2G6-related neurodegeneration (PLAN) diseases. The Foundation’s team of scientists and advisors have provided a 24-month path to “transition one of their major initiatives, a gene therapy program from preclinical studies to human trials,” a monumental step for such a rare disease.

“Our kids do not have the luxury of time,” says Leena. “We need a treatment and cure as quickly as possible because time is of the absolute essence for them.”

To learn more/donate, please visit Ariyaswish.org.