The INADcure Foundation is a 501c3 nonprofit charity whose mission is to support the development of treatments, including a cure, for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN).
We are the only U.S. based nonprofit organization focused exclusively on bringing breakthrough treatments, and one day a cure, to all children living with INAD. We facilitate communication and collaborations between academia, research institutions, and biotech and fund the most promising INAD research. We are proud to have been selected to be part of the Chan Zuckerberg Initiative’s Rare As One Network. This initiative supports organizational capacity building and infrastructure needs, and will allow us to build, grow and manage our research network to improve collaboration and accelerate the study INAD. Our work also includes educating the public about INAD and other forms of PLA2G6-related neurodegeneration, advocating for better access to treatment, and supporting the families and caregivers of children diagnosed with INAD worldwide.
Scientific Research
To Improve Treatment & Find a Cure
The INADcure Foundation was formed to fund 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 while forging partnerships with academic institutions, biotechnology and pharmaceutical companies to accelerate the development of treatments.
Support
Connecting Families and Providing Helpful Resources
We are 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 provide support to families through a private forum in which to exchange information, ideas and advice. The 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.
Advocacy
Raising Awareness
We hope to make our network of families and advocates a powerful voice. Join us as we raise awareness for INAD within the community, including the medical profession, and advocate for improved outcomes for our children.
Foundation Milestones
One of the first priorities of the INADcure Foundation was making sure that fundamental resources were in place to support current and future researchers working on INAD. We ensured the support of a Natural History Study for INAD, and funded an interim analysis of the available data. We also worked quickly to establish a biobank in partnership with the New York Stem Cell Foundation which now houses a collection of patient samples that are readily available to researchers. Establishing the INAD biobank created a fast, streamlined process for researchers around the world to have access to patient cells to work on. The Foundation covers all costs associated with sample collection and storage.
Natural History Study
A natural history study tracks the course of a disease over time. Natural history studies provide data that serve as the foundation for future drug trial, are required by the FDA, and can hold up a study from starting if natural history data is not sufficient. Supporting this work is essential in order to ensure the rapid advancement through the FDA’s clinical trial application process when potential new drugs or treatments are ready for clinical trials. We are currently funding year 2 of this 5-year study.
INAD Biobank
- 15 samples collected (collection efforts ongoing)
- Induced Pluripotent Stem Cell Lines (iPSCs)
- Fibroblast cell lines
Mouse Model
In partnership with Baylor College of Medicine a mouse model is being created to use in several research initiatives taking place at multiple labs across the country.