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At first, Emily Sylvester thought Hackenberg was just trying to drive up the bid, but then she realized he was trying to get the surfboard — for Betsy. “I was so shocked, I had no idea he was going to do that,” Sylvester says. “I don’t even think he knew he was going to do that.” Sylvester says Hackenberg was likely inspired by a video screened earlier that night featuring parents, including her, speak-ing about the realities of raising a child who is living with CF. At the auction’s height, Hackenberg’s persistence prevailed; he cast the final bid: appropriately, $6,500. Susan Wasserman, Pipeline to a Cure East co-chair, is the mother of a teenage daughter who also lives with CF. She retells the 65 Roses story that began in 1965, when a Florida mother, Mary G. Weiss, began to raise funds for cystic fibrosis research when all three of her young sons were diagnosed. Both Weiss and her hus-band were carriers of the CF gene, a perfect match for the life-threatening disorder that damages the respiratory and digestive systems. She began volunteering for the Cystic Fibrosis Foundation, spending hour after hour on the phone to raise money. One day her 4-year-old son, Richard, approached her, saying, “Mommy, I know what you’re fund-raising for.” Weiss was afraid to hear what her little boy might have overheard her say about the disease, but she asked him, “What am I raising money for?” “Sixty-five roses,” Richard said. The phrase caught on as other tiny children diagnosed with cystic fibrosis struggled to pronounce the name of the disease. Now for the fourth year, the pièce de résistance of Wasserman’s Pipeline to a Cure East auction is a 65 Roses surfboard. A board concept was chosen to bear the 65 Roses theme to highlight the connection between surfing and CF. Recently, doctors in Australia observed CF patients who surfed had better lung function than those who did not. Inhaling the salt laden air helped clear their lungs of mucus, doctors realized. The discovery inspired the development of a hypertonic saline drug now used by CF patients worldwide. Two boards shaped by Greg Eavey, well-known surfboard maker renowned for creating artful boards, were auctioned in 2012 and 2013. Shawn O’Donnell, fellow surfboard craftsman, took over the task of creating the surfboard in 2014. During that year’s auction, another local surfboard shaper, Ian Balding, was in the audience. Balding began to imagine ways in which he would interpret the 65 Roses theme and, since several of his friends’ children are affected by CF, the pros-pect of raising such a large sum of money to fight the disease further inspired him. He asked O’Donnell for the oppor-tunity to design the 2015 board, and O’Donnell agreed. Wasserman says the generosity of the region’s most talented surfboard shapers, as well as the shapers’ will-ingness to share the honor of design-ing the board, is just one example of the united community resolve to someday eradicate the disease. “Sixty-five Roses is the symbol for cystic fibrosis,” Wasserman says, “but what it also means is … mothers and fathers and friends and family and community all coming together … so we can make CF stand for cure found.” trending One day her 4-year-old son, Richard, approached her, saying, “Mommy, I know what you’re fundraising for.” Weiss was afraid to hear what her little boy might have overheard her say about the dis-ease, but she asked him, “What am I raising money for?” “Sixty-five roses,” Richard said. The phrase caught on as other tiny children diagnosed with cystic fibrosis struggled to pro-nounce the name of the disease. Shaper and artist Greg Eavey poses with his 2013 board. BEACHY KEEN PHOTOGRAPHY 14 WBM august 2015


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