When four-year-olds Robbie Edwards and Molly Duffy met in person last year, they were the only two people in the United States with a diagnosis of Spastic Parapalegia-47 (SPG47), and just the 10th and 11th in the world.

As the tots happily played together, their parents, Chris and Kasey Edwards, and Kevin and Angela Duffy discussed how they could possibly help save their daughters’ from the fate of this devastating disease — resembling cerebral palsy — in which no research existed.

Immediately, they founded the non-profit Cure SPG47 and established a renowned scientific team composed of some of the best minds in the fields of neurology, translational neuroscience, cell biology, gene therapy and clinical drug development.

This past year, Robbie and Molly strengthened their bond, while their parents initiated two promising research options through Cure SPG47 and funded the early stages of this research: Drug screening at Boston Children’s Hospital and gene therapy at the University of Sheffield, UK.

Recently, something amazing happened. An anonymous “Angel donor” has offered to match total donations up to $100,000 until the end of January. While millions are needed to fund research in full, a sum this big could be the push needed to advance proof-of-concept research enough to hopefully attain grant funding.

Read the full article about the toddler friends fighting the disease SPG47 by Kasey Edwards at medium.com.