When my four-year-old daughter, Robbie, and Molly Duffy met in person last year, they were the only two people in the United States with a diagnosis of SPG47, and just the 10th and 11th in the world!
As our tots happily played together, myself and my husband, Chris, and Kevin and Angela Duffy discussed how we could possibly help save our daughters’ from the fate of this devastating disease, seeing as no research on it existed.
Immediately, we 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 we 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.
Successful research could prevent SPG47 from taking away the physical and verbal milestones Robbie and Molly work so hard to make.
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.
This is great news for Robbie, Molly and the several other equally adorable and sweet youngsters recently diagnosed with SPG47.
Readers can help get the impossible done and turn $100,000 into $200,000 by sharing and/or donating to Cure SPG47’s Gofundme: https://www.gofundme.com/DoubletheGood!
More info: gofundme.com
Fast friends, these two share many things in common
They are both just the sweetest
They LOVE to laugh
And have a deep appreciation for swinging!
And they are very curious
While the girls play, their parents have been busy working on a cure
Successful research will not just help Molly and Robbie, but those newly diagnosed and yet to be diagnosed
Help us get the impossible done
Double the Happiness, Double the Joy, Double the Good
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