On Saturday, September 24, when the Mets play the Philadelphia Phillies at Citi Field, $30 of every ticket purchased will go to the Progeria Research Foundation (PRF). Progeria is an extremely rare disease–only 145 known cases worldwide–that causes the children who have it to age rapidly. Children with Progeria can die of heart attacks and strokes when they are just 14. Zoey Penny, who will be entering first grade this fall, knows the disease all too well: She was diagnosed with Progeria when she was just 5 1/2 months old. The game will also be a seventh birthday celebration for Zoey, who will get to throw out the first pitch.
“We have been blown away by what the Mets offered to do,” says Laura Penny, Zoey’s mom. “We did not expect it be that good.”
How the fundraiser came together–and how fast–is equally astonishing. Laura Penny’s family has what they refer to as “beach friends”, people they see when they are down at the Jersey Shore. “We have known them forever,” she says. Earlier this summer, the nephew of these beach friends and his girlfriend, Rachel Pope, learned about Zoey. Pope had just moved to the East Coast from Arizona and had started a job as a sales representative with the Mets. “I said, ‘I don’t know what I can put together, but let me meet with my directors’,” recalls Pope. “I did the next day and I put a plan in pace with some of my ideas.”
Big fundraisers, especially those involving a major sports franchise, can take months to bring to fruition. Pope teamed with Laura Penny’s father, John Marozzi, who has served on PRF’s board almost since his granddaughter was diagnosed, to pull off this fundraiser in a matter of days. Pope had previous experience running a fundraiser for a sports technology company in Arizona and Marozzi’s “Team Zoey” has held annual 5K races and golf outings sine 2010 to fund research into Progeria. Some 800 people signed up to run in the “Turkey Trot” 5K in Verona Park last Thanksgiving weekend. “Our biggest fundraiser, the golf event, is two days after Mets game,” says Marozzi. “I said, ‘the heck with it, let’s do both’. You can’t turn away from a gift like this.”
These efforts, and PRF’s many others, are beginning to pay off. The first drug trial that PRF funded resulted in Progeria patients seeing increased weight and bone density, and better heart function. A new trial that began in April will pair the drug everolimus with the lonafarnib treatment tested in the first trial to see what additional benefits can be gained.
“We also have 30 researchers around the world to whom we have given grant money who are working on other aspects,” says Marozzi. “We hope that they will be successful and find other drugs and eventually find a way to manipulate the genes in vitro. The cure will come in a genetic world and we have scientists working on that as well.”
“It sometimes seems like ice bergs moving slowly,” adds Marozzi, “but in a medical world this is lightning quick. It is unusual to move this fast.”
If you want to attend the Mets’ Progeria fundraiser, which starts at 7 p.m., you’ve got to buy your tickets through a special link the team created, www.mets.com/zoey. To bring a large group or for higher donation inquiries, you can contact Rachel Pope at 718-559-3019 or email her at [email protected].
“For me, someone who doesn’t have to go through [Progeria] every day, I feel that this is not enough,” says Pope of her efforts. “I wish there was more that we could do.”
