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To raise awareness around a rare degenerative childhood neurological disease called H-abc. The disease is very rare affecting less than 150 children. As such little attention is given to the disease
We are a grass roots cause created by parents of a child with h-abc in 2015. We have raised approximately $100000 per year to fund researchers who are working on gene therapy to stop the progression of the disease. To date they have demonstrated their approach works in animal models. These are proven techniques and have worked on other diseases for children. We hope our efforts will help these children and others with similar diseases