As researchers seek a cure for the rare bone disease called FOP, fund-raisers are also hard at work.
Money from the National Institutes of Health covers less than a quarter of the University of Pennsylvania laboratory's $1 million-plus annual costs. The rest comes mostly from families who organize all kinds of events.
On a farm in Harestone, Scotland, 6-year-old Cameron Barclay and his parents have hosted three barn dances, moving their 70 cows into the fields for the occasion.
"We hosed down the barn and laid down a wooden dance floor," says his mother, June Barclay.
Despite his FOP, she said, Cameron "takes his little pedal John Deere tractor out."
And he helped with the balloons, while neighbors and friends pitched a tent as a "casino" for roulette, blackjack and dice, moving small wooden racehorses along with bets.