Penn scientists were instrumental in the recent discovery of the gene that causes fibrodysplasia ossificans progressiva (FOP), a rare condition that causes the growth of a second skeleton. It's a fascinating and inspiring story.
The group’s members gave [Frederick Kaplan]
more than their stories and DNA: they began raising money. Nick Bogard, whose son Jud had been diagnosed with the disease at age 3, organized a golf tournament in Massachusetts that raised $30,000. That money allowed Kaplan to host the first scientific conference about FOP, in 1991. Other families hosted barbecues, ice-fishing tournaments, swim-a-thons, bingo nights. In 2012 alone, Peeper’s organization raised $520,000 for research. That’s not much compared with, say, the $1 billion that the NIH distributes each year for diabetes research. But these funds were crucial for Kaplan, who sought to escape the rare-disease trap. IFOPA’s money—as well as gifts from other private donors and an endowment accompanying Kaplan’s professorship at Penn—made it possible for him to work single-mindedly on FOP for more than two decades.
Original source: The Atlantic
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