18 News had an exclusive interview with the Southern Tier native who tells us about his journey creating his non-profit. Horgan says it all started with wanting to help his brother with his rare disease from a young age. He attended Cornell University right here in the Southern Tier and Harvard University. This is where he brainstormed the idea for his non-profit with a mentor.
“I have a younger brother who was impacted by Duchenne muscular dystrophy, and growing up in upstate New York, he and I spent a lot of time together,” said Horgan. “And I knew from an early age that I wanted to do something to help Terry, my brother, but I didn’t quite know what that was.”
Horgan says his organization creates therapeutics for rare diseases with no cure.
“Industry as a whole is very good at developing therapeutics for an entire population,” said Horgan. “However, the the pharma-co economics don’t really work out when a therapeutic needs to be developed, or one or 10 or 100 people and so that’s really what cure a disease steps in to try to fill the void that traditional drug development, respond.”
His organization has raised over $2.3 million dollars according to Forbes.
Horgan says he believes they’ve figured out a cure for his brother’s rare disease.
“So we started this back in October 2018, and since then we’ve corrected my brother’s cells in a dish, and the technology we’re using is called CRISPR,” said Horgan. “It’s an acronym, and CRISPR is, you can think of it as sort of being able to change one’s DNA and so rare genetic diseases, of which Muscular Dystrophy is one that’s caused by a mutation in DNA and so we actually go in with little molecular scissors and either cut or insert on a DNA level, something of a therapeutic value. And so for my brother what we’ve done is actually we’ve taken the CRISPR technology and inserted that into cells in addition, and we’ve seen great results from that so far back in the springtime and 2020, we moved on to animal experiments to understand safety and efficacy and those experiments have gone well too.”