Until Every Child Is Well Feature Stories

Philanthropy Report 2012 Until every child is well Feature Stories ...........................................................................................2 Event Highlights ......................................................................................12 Donor Recognition and Financials....................................................16 Children’s Heroes.....................................................................................18 Signature Society: Named Endowed Funds .....................................19 Children’s Circles of Leadership ..........................................................22 Circle of Care....................................................................................22 Circle of Promise .............................................................................25 Circle of Courage ............................................................................25 Circle of Hope ..................................................................................27 Legacy Circle ....................................................................................32 Estates and Trusts ....................................................................................34 Tributes .......................................................................................................34 Foundations...............................................................................................36 Corporations .............................................................................................37 Matching Gifts...........................................................................................39 Gifts in Kind................................................................................................39 Associations...............................................................................................40 Children’s Hospital League ...................................................................40 Boston Children’s Hospital Trust Events ...........................................42 Champions for Children’s .............................................................42 Milagros Para Nińos........................................................................42 Miles for Miracles Athletic Program ...........................................43 Boston Marathon.........................................................................43 Boston’s Run to Remember .....................................................43 ING New York City Marathon...................................................43 New Balance Falmouth Road Race........................................43 Other runs .....................................................................................43 Cycle ...............................................................................................43 Mix 104.1 Cares for Kids Radiothon ...........................................43 NSTAR’s Walk for Boston Children’s Hospital .........................43 Texas Hold ’Em.................................................................................45 Community Fundraisers.........................................................................45 Volunteer Leadership..............................................................................46 On cover: Hey, it’s me, Lucas. My mom and dad took me to NSTAR’s Walk for Boston Children’s Hospital last year—boy was that fun. Check out my tshirt—yep, I was born with half a heart. Well, not quite half, it’s something called hypoplastic left heart syndrome. Docs say the left side of my heart is underdeveloped, making the right side work harder. Read more about me on page 2. | 1 At Boston Children’s Hospital, we’ll do just about anything to advance patient care and research— see for yourself in these pages. But it’s nothing compared to what you— our biggest supporters—will do. You tapped into your talents and wrangled friends. You coordinated Harley rides (that was fun, wasn’t it?), played poker, hosted yard sales. You did that, you’ll do more, until every child is well. thank you. 2 | Boston Children’s Hospital | Care Sleepless nights, inconsolable crying— there’s lot to expect when you’re expecting. A congenital heart defect shouldn’t be one of those things. At other hospitals, parents are offered They named their unborn son Lucas, counseling. At Boston Children’s, our which means bringer of light. “And work begins. that’s what we needed,” Becky says. In 2001, a Boston Children’s team Because Lucas was diagnosed early, What does the future look like performed the world’s first successful Boston Children’s surgeons knew for kids with congenital heart fetal cardiac intervention. Today, the defects? Pretty amazing with what to expect, greeted Lucas upon help from Boston Children’s. program has grown to the largest, his arrival, and got to work—repairing Get a load of 7-year-old Noah, most respected of its kind. Early his heart defect, an underdeveloped above. He loves playing diagnosis means better treatment— left ventricle. For the next generation baseball, is a whiz at math, and tracks the stats of his favorite a lifeline to the nearly 40,000 babies of babies born with hypoplastic left teams—even has his own born each year with a heart defect, heart syndrome, Boston Children’s fantasy hockey team. Naturally, some whose parents are told to cardiologists are exploring an innova- he’s the general manager, terminate their pregnancy. That was tive treatment: marshaling the body’s checking progress each morning before school. But Bill and Becky McGowan’s experience natural capacity to heal, encouraging before Noah was born, his at their local hospital. undersized ventricles to grow to give parents Dan and Shoshana the child a fully functioning heart. Farb faced uncertainty when “We were terrified and didn’t know That pursuit of a better way is endless they learned their son had a what to expect,” Becky says. “It wasn’t heart defect. Boston Children’s at Boston Children’s—and it’s a pursuit until we got to Boston Children’s surgeons saved his life, and his made possible by philanthropy. parents will be forever grateful Hospital that we felt we were in the he can lead a life without right hands. We’re one of the luckiest limitations. They recently made families in the world because we live a leadership gift to the hospital’s Heart Center. “We an hour away from the greatest feel very lucky,” Shoshana says. hospital on the planet.” Dan added, “We owe a huge debt to the hospital. If we can be at all helpful, we feel an obligation to do that.” The Heart Center at Boston Children’s 1986 1990 Hospital has grown to become the 1938 largest, most respected pediatric World’s first successful surgery Inception of heart transplant First pediatric non-surgical cardiovascular program in the world, to correct a congenital cardio- program. repair of a cardiac arrhythmia. with a history of innovation: vascular defect. The technique? Using radio waves through a catheter. | 3 1999 2001 2002 today FDA approves CardioSEAL, World’s first successful in First robot-assisted cardiac 150 fetal heart surgeries in a minimally invasive device utero repair of a heart defect. surgery at a pediatric center. total, 6,000 adult cardiac developed at Boston Children’s patients—the largest adult to repair holes in the heart. congential heart program in the world. 4 | Boston Children’s Hospital | Research The birth of twins, Jayda and Jason, spelled joy for their parents Grace and John Bbosa. But “frequent flier” status in the emergency room soon became the norm. Jayda’s diagnosis: sickle cell disease. For many, it’s a misunderstood eliminate the disease’s symptoms. disease …we know it, but we don’t And on a parallel track, Orkin’s know it. One in ten African Americans colleague David A. Williams, MD, carry the genetic trait for the is exploring gene therapy to The lights of Las Vegas— condition, in which malformed, permanently cure sickle cell disease. fueled by the generosity of Gary Loveman, Chairman, sickle-shaped blood cells cause He’s already cured a previously President and Chief Executive excruciating pain, organ failure and untreatable immune deficiency Officer of Caesars Entertain- early death. The average lifespan if disease through gene therapy. Sickle ment —are bright enough to shine on a little girl in Revere, you’re “lucky” enough to be living in cell is next. And he’s got families like Mass. Loveman, a Boston the US? 46 years. the Bbosas pulling for him. Children’s board member, harnessed the star power of For Jayda, the swelling in her hands “I pray for a cure every single night. Celine Dion to create and feet was so painful, she couldn’t Jayda kneels down and prays. We are Play Without Pain, a concert put pressure on her legs to walk. believers,” Grace says. “They’re going benefiting sickle cell research and kids like Jayda, at right, to find a cure. And when they have a “It was very sad as a mother,” says who suffer from the disease. cure, we’ll be the first in line.” The January 15 concert raised Grace. “You don’t know what to do. more than $1 million. “As a You do the best you can.” parent, I’ve been touched by the stories that were shared with But now Boston Children’s me about the impact sickle cell researchers are on track to develop a anemia has on millions of cure for sickle cell in two years. children around the world,” said Dion. “I wanted to help. Stuart H. Orkin, MD, has found a gene No child should have to live a called BCL11A that can switch off the life filled with pain.” Loveman’s protein

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