WOODBRIDGE, Conn. (WTNH) — In 2019, Rich Horgan was spearheading the development of a first of its kind gene therapy to help slow or reverse his younger brother Terry’s devastating disease.

“Duchenne muscular dystrophy is a fatal progressive neurological muscular condition that impacts boys,” Horgan explained to NewsNation local affiliate WTNH four and a half years ago.

Yale researchers worked with CRISPR technology and a clinical trial was given the green light by the FDA.

In October of 2022, Terry received the treatment and died just days later.

“For Terry, he went into this with eyes wide open that this could be, would be dangerous,” Horgan said.

Horgan is the founder of Cure Rare Disease, a non-profit aiming to fund and develop next generation therapeutics.

He said Terry’s age and stage of disease factored into the tragic outcome. He was 27 at the time of his death.

“But Terry was a very brave and smart individual who made those choices, knowing more than anybody, what the disease was taking from him,” Rich said.

The organization was transparent through independent studies and statements about the loss, and vowed to keep going.

“We lack effective development pathways for these ultra-rare and neglected patients and so our work has to continue,” he said.

On Saturday, Cure Rare Disease opened a state-of-the-art lab in Woodbridge, supported by Senators Murphy and Blumenthal.

Federal funding was used to renovate the 10,000-square-foot space where scientists will be hard at work.

An incredible piece of art- made-up of thousands of pictures of Terry- welcomes visitors to the building.

“The mural helps us to keep in mind the real reason why we’re here,” Rich said.

He is committed to keeping Terry’s legacy alive and making a difference for other patients.

It’s a passion, and a promise.

“My reason was- and continues to be- Terry and I sleep well, or better, at night knowing we do what we do for the right reasons,” he said.

Rich believes the future is bright for rare and ultra-rare disease patients. Advancements are being made all the time.

He hopes the new lab is the first of several similar locations in the state.