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The INADcure Foundation was founded in 2016 by Leena and Anil Panwala after their daughter, Ariya, was diagnosed with Infantile Neuroaxonal Dystrophy. Infantile Neuroaxonal Dystrophy (INAD) is an extremely rare, rapidly progressing, genetic disorder. Children with INAD typically reach all or most milestones and develop normally at first, with symptoms starting anywhere from 6 months to 3 years of age. After which, the child will start to regress and lose all acquired skills including mental, cognitive and physical abilities. The incidence and prevalence of this rare disease is not known with any certainty. One source suggests that there are only around 50 children affected, worldwide.

About the Foundation

It was not long into their journey that Leena and Anil Panwala realized that the INAD community needed a unified voice, and a centralized effort, to raise funds necessary for scientific research into finding better treatments and ultimately a cure for this devastating disease. They found there is hope as there is promising research studies currently under way that aim to treat and possibly even cure INAD.

The Foundation was formed to provide:

Scientific Research: For Better Treatment & A Cure

The INADcure Foundation's grant making program funds scientific research for treatments and a cure for INAD and other forms of PLA2G6-related neurodegeneration (PLAN). The Foundation identifies and funds the most promising INAD research projects and forges partnerships with academic institutions, biotechnology and pharmaceutical companies to accelerate the development of treatments.

Family Support: Connecting Families to Each Other & Helpful Resources

The INADcure Foundation is the only U.S. based nonprofit dedicated exclusively to INAD community. We provide up-to-date information to diagnosed families regarding the disease and current research initiatives. We also manage a private forum in which information, ideas, advice and support is safely shared between families. This online discussion forum is restricted to families, caregivers, and medical and scientific professionals who have direct connections with individuals who have been diagnosed with INAD.

Raising Awareness & Advocacy Work

We hope to make our network of families and advocates a powerful voice, as we raise awareness for INAD within the community, including the medical profession, and advocate for improved outcomes for our children.

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