Top Image © Courtesy of INADcure Foundation
“I think of all of the wishes Ariya would have had as a little girl growing up, if she didn’t have INAD…now, I believe her sole wish would be to be able to interact with us again”, says Leena Panwala of her daughter, afflicted with INAD—a devastating rare neurodegenerative disorder that leads to a complete loss of awareness as well as gross and fine motor skills.
After a year of unexplained symptoms, frantic visits to top specialists and several rounds of genetic testing at top United States hospitals, Ariya Panwala received her diagnosis shortly after her second birthday. “She could still sit on her own but was rapidly losing ground. She had lost most of the skills she gained in her first year of life, including the ability to hold her head up, crawl, and play. She never learned to walk or talk, and the doctors said she would continue to regress,” Ariya’s mother, Leena, recalls.
It was a genetic disease—a mutation on the PLA2G6 gene, which causes Infantile Neuroaxonal Dystrophy (INAD), a fatal neurodegenerative disorder that affects young children and shortens their lifespans to just five to ten years. After wrapping her mind around the heartbreaking symptoms her daughter would suffer from, Leena asked if there was anything available that could stop or slow the progression. She quickly learned that there were no treatments, no cure, and that INAD was so rare that it wasn’t on anyone’s radar; thus, no hope.
For Leena, learning that nothing could be done to stop the progression of a disease that would leave her daughter immobile, nonverbal, with hearing and vision loss was terrifying. She spent sleepless nights searching for information, scouring every source she could find for help. Watching Ariya slip away has been a constant motivating factor for her to push for the best treatment possible for this disease.
With little Ariya as her inspiration and a desperate desire for children with this condition to have the best chance at life, Leena formed the INADcure Foundation.
For the past five years, Leena and her team at the foundation have been laser-focused on accelerating a path to safe and effective treatments and a cure for INAD and other PLA2G6-related neurodegeneration (PLAN). The team of scientists and advisors has provided a 24-month path to transition their gene therapy initiative from preclinical studies to human trials. Leena has also created a campaign called Ariya’s Wish to not only spread INAD awareness within her local community but to raise the necessary funds to support the gene therapy preclinical studies as well as human clinical trials.
These achievements have established a monumental legacy for both Ariya and Leena in creating hope for families like theirs.
With a goal of $7 million, they are asking one million people to donate just $7 each and help Ariya’s wish to #beatINAD come true.
Please visit ariyaswish.org to be one of Ariya’s million!
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The INADcure Foundation was born from Ariya and her friends in 2017 with the purpose and passion to spread awareness and work together with the scientific community to effectively treat and eradicate INAD.