Rich Horgan (R) with his late brother, Terry

Rich Hor­gan spear­head­ed a gene ther­a­py for his broth­er. The tri­al end­ed in tragedy, but the work con­tin­ues for more pa­tients

Rich Hor­gan’s quest to cre­ate a cus­tom gene ther­a­py for his broth­er, Ter­ry, end­ed in tragedy. But Hor­gan doesn’t be­lieve it’s the end of the sto­ry.

Ter­ry, a 27-year-old pa­tient with Duchenne mus­cu­lar dy­s­tro­phy, died last Oc­to­ber just eight days af­ter re­ceiv­ing the ther­a­py in a clin­i­cal tri­al in which he was the on­ly par­tic­i­pant. The case raised ques­tions about the safe­ty of cer­tain gene ther­a­pies and what would hap­pen to oth­er drug pro­grams un­der a non­prof­it that Hor­gan cre­at­ed, called Cure Rare Dis­ease.

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