2:10 1994: “In a few minutes a couple of days before Christmas in ‘94, our life just flipped upside down…”
6:10 The long journey to treatment continues. . .
14:30 In the Genetic Alliance, Sharon finds a vehicle.
17:30. The iHope Program
22:22 “We don’t want to do helicopter medicine.” Everyone will own their own data and use it as they see fit.
25:00 How did she make this happen?
29:40 Biggest challenge? Getting the (relatively) small amount of money to cover operating costs and support their massive in-kind donations from Illumina and Amazon. “There is no philanthropic ecosystem in inherited disease the way there is in infectious disease.” Biggest reward? Sequencing 50,000 probands and in many cases their parents will provide data on both rare and common diseases. “This resource is going to be such an engine for getting more done.”
In a field full of amazing people, no one --- no one -- is more remarkable than Sharon Terry. And this is despite (or perhaps because of) the fact that she is not, technically, in the field at all: Sharon Terry is, as her bio describes her, “just a mom with a master’s degree in theology.” Sharon’s personal story of a journey from the worst form of heartbreak and disempowerment – the discovery that both of her young children had a rare genetic disease with a bad prognosis – to become a role model for parent activists everywhere. Sharon’s work as the head of the Genetic Alliance is legendary for the way it has platformed (literally) hundreds of disease communities ranging from small to microscopic so that they could speak to one another, and so that the Genetic Alliance could speak for all of them, a collective army of the individually rare.
Now, Sharon is planning an even bolder move: to bring the promise of genomic medicine to the whole damn world. Beginning in 2023, the iHope program will use an enormous grant from genomics giant Illumina to sequence sick kids and others in Africa, Southeast Asia, and South America (as well as other neglected places, some of them right here in the US).
Sounds impossible, right? Tell that to a mom on a mission!