Left to right: Teaghan Duff, Talia Duff, Jocelyn Duff and John Duff. (Courtesy of Duff family)

$97M gene ther­a­py con­sor­tium aims to give com­pa­nies and rare dis­ease fam­i­lies a ‘north star’

There was a time when Jo­ce­lyn Duff didn’t know how to an­swer her neigh­bors’ oft-asked ques­tion: “How is your daugh­ter, Talia?”

Their small sea­side com­mu­ni­ty of Ip­swich, MA, was piv­otal in rais­ing $1 mil­lion for an ex­per­i­men­tal gene ther­a­py tar­get­ing Talia’s ul­tra-rare dis­ease. Then came man­u­fac­tur­ing set­backs and Covid-19 closed labs. She said a phar­ma­ceu­ti­cal com­pa­ny — for which Duff de­clined to name — de­pri­or­i­tized the ther­a­py.

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