PARTNERS in Hope and Discovery Where the Power of Childhood Meets the Power of Research

PARTNERS in Hope and Discovery Where the power of childhood meets the power of research 2016 ANNUAL REPORT WHERE BREAKTHROUGHS HAPPEN The National Institutes of Health (NIH) is the world’s premier biomedical research institution—and the breakthroughs that happen here are the first steps toward eradicating diseases, easing pain, and making better lives possible. None Inn residents of these medical advances would be participated possible without the people who drive them: children, families and caregivers, in 283 clinicians and staff—the community The CLINICAL Children’s Inn brings together. The Inn TRIALS provides relief, support, and strength to at the NIH these pioneers whose participation in in FY16 medical trials at the NIH can change the story for children around the world. Inn residents are a part of pediatric protocols in 15 of the 27 INSTITUTES and CENTERS at the NIH On the cover: Inn resident Reem, age 7 from Egypt, with her NIH physician, Dr. Neal Young. She is being treated for aplastic anemia at the National Heart, Lung and Blood Institute. As partners in discovery and care, OUR VISION we strive for the day when no family endures the heartbreak of a seriously ill child. Letter from the Chair of the Board and Chief Executive Officer The Inn’s Board of Directors had an eventful We are so grateful to you: our donors, volunteers, year. We have worked diligently to restructure and friends, who help The Children’s Inn make a and prepare The Inn for the future, and recently profound impact on the lives of the NIH’s young- welcomed some talented new members to our est patients. The children who walk through our roster. doors face unimaginable challenges and have This transition marks a bittersweet moment already lived through more than most. Your for The Inn, as we face the departure of some of support gives them the chance to play, to laugh, our incredibly dedicated original board mem- to be themselves, and just be kids. bers. These board members, many of whom Every part of The Inn reflects our heartfelt have been with us since our doors opened, have mission to support children and families in provided immeasurable vision and resources, difficult times. Programs like our family dinners and we are grateful for their exceptional passion and summer-long Camp INNcredible bring and devotion to The Inn over the years. They’ve families together, providing welcome respite shepherded The Inn from a cozy 36-bed “place from daily stresses. Our public spaces like our like home” to a greatly expanded, yet still Teen/Young Adult Lounge, Exercise Studio, and welcoming, 59-room facility that now includes Breakfast Bistro—each completely renovated The Woodmont House. Along the way, they have in FY16—are thoughtfully designed to meet a helped The Inn support thousands of children family’s every need. Half of our residents suffer and their families while empowering the NIH’s from a rare disease and a third are battling cancer. research mission. At home, these children often feel “different,” As The Inn evolves to meet the emerging but at The Inn, this uncommon community finds needs of the children and families seeking hope common ground. at the NIH, our board has ensured it remains a Supporters like you help give families place of unparalleled respite and encourage- the hope NIH offers, as they advance medical ment, and I am grateful for their outstanding breakthroughs. We are truly appreciative of your efforts. generosity. Kelvin K. Womack Jennie Lucca Chair, Board of Directors Chief Executive Officer 1 The Children’s Inn will fully WHERE OUR MISSION and consistently meet the RELIEF IS needs of children and families participating in ground- POSSIBLE breaking research at the National Institutes of Health. When a child is suffering, their entire We will: support system feels it too. That’s why • Respond to evolving family The Inn offers services, activities and support needs for pediatric programs not just for patients, but also for research and clinical care parents, siblings and caregivers. We take • Provide a free, family- care of the little things so families can stay centered focused on the big ones: keeping their sick “Place Like Home” child happy, making time for themselves, • Reduce the burden of and supporting one another. In Fiscal Year illness through therapeutic, 2016, The Inn celebrated many accom- 1,572 educational, and plishments that will positively impact the FAMILIES recreational programming stayed at lives of residents including: renovating the Exercise Studio, Teen Lounge and Bistro THE INN and launching the INNrichment Fund- in FY16 providing residents with scholarships for educational or therapeutic opportunities. We also received the Washington Business Journal’s “Best Places to Work” award. THE INN PROVIDED— In FY16: (above left) Zilly, The Inn’s $4,912,000 $2,851,000 therapy dog, became certified. Three of HOUSING + FAMILY =FREE our communal spaces underwent major LODGING renovations: (above right) the Exercise SUPPORT SUPPORT Studio, thanks to a grant from The Philip L. Graham Fund, (left middle) the Teen HEALING Lounge, thanks to a grant from the Neall FOR RESIDENTS Family Charitable Foundation and (lower left) the Bistro, thanks to a gift from Thomas and Kathleen Fingleton. 2 3 WHERE CHILDHOOD THRIVES We make childhood possible for children who’ve already lived through more than most, and who don’t have many chances to just play. To laugh. To be themselves. To be kids. Childhood is about learning, growing and having fun, so our programs run the gamut. The children that walk through our doors face unimaginable challenges—but through it all, they’re still kids. That’s why MORE THAN MORE 12K we work to make every memory here at families have The Inn a great one. stayed since 1990 + RECREATIONAL, THERAPEUTIC, EDUCATIONAL and SPIRITUAL ACTIVITIES offered at The Inn 300 that help reduce the burden , of illness. 1 4 5 WHERE CHILDHOOD Hayden Corrie 5 Years Old THRIVES National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Hayden and his “Maybe the NIH can help!” mother, Shawna Hayden Corrie loves watching football (well, misdiagnoses made the search for answers tough. “solve” Hayden’s mysterious condition. After an Inn. “How many more ‘sleeps’ before we go?” he actually, the cheerleaders), eating boiled peanuts, Cytomegalovirus infection? A penicillin allergy? agonizing year of searching, the scientists found asks his mom, with happy anticipation. and seeing the South Carolina Stingrays play The family received these and many other what they were looking for – a misspelled LYN No child enjoys medical pokes and prods and hockey. He’s an adorable, funny child— “the guesses from doctors who desperately wanted to gene not present in his parents or healthy siblings. passing the time in hospital hallways for hours on family comic,” according to his mother Shawna— help but had no idea what was going on. As it turns out, an experimental drug end, but Hayden’s NIH medical family finds many and he has quite the dance groove: Gangnam Then Hayden’s great-uncle saw a special on blocking LYN function was already being tried ways to ease his anxiety and pain, and, as mom Style, in particular. TV’s 60 Minutes about the NIH’s Undiagnosed to treat leukemia patients. In collaboration with describes, “for him to be the best version of himself.” Meeting 5-year-old Hayden, though, Diseases Program. Maybe, Shawna thought, the NIH oncology doctors, Hayden was started on “Monsignor Lollipop,” who magically extracts sweet you’d never know he is one of only two people NIH could help. Although that particular program the twice-daily pill. The results have been mixed, treats from his ear, greets Hayden after painful worldwide to have a disease that is so rare it was not a fit for Hayden, a visit to the NIH led providing relief for a time and leading to reversal blood draws. In the Clinical Center playroom, doesn’t have a name. His condition results from a to answers. “We evaluated Hayden in the NIH of his liver condition, but Hayden’s doctors are Hayden re-connects with his guinea pig friends mutated, or misspelled, gene, “LYN,” which is sup- autoinflammatory disease clinic where we use a considering other options for the long term, who he got to name himself: Swirl and Twirl. posed to police the activity of Hayden’s immune personalized plan to diagnose and treat children including a bone marrow or stem cell transplant. At The Inn, Hayden adores frolicking with cells. Instead, that policing is out of whack and with early-onset inflammatory conditions,” says Both of his brothers are perfect matches for a Zilly, the therapy dog, playing Bingo, and singing his body constantly attacks itself. The result is Dr. Raphaela Goldbach-Mansky, who oversees transplant. silly songs with Chaplain Mike on Tuesdays. ongoing inflammation, frequent infections, skin Hayden’s care. “I don’t know what we’d do without it,” says According to Shawna, these fun and calming issues, and chronic liver disease. He’s often very Her team did tests and collected blood and Shawna of The Children’s Inn, where they stay distractions pad the long, hard days and help to tired yet he doesn’t let it show. tissue samples. They did the same for his two older during medical treatments. “The Inn staff and lessen uncertainty about Hayden’s future. “We are Hayden has been this way since birth. brothers and parents—all healthy. The goal: to volunteers really make it the special place it is,” so grateful for The Children’s Inn and Hayden’s As with many rare conditions, a series of find gene differences that could give clues to help she says, adding that Hayden cannot contain his NIH team: He loves each and every person there.” excitement when it’s time to come back to The 6 7 WHERE CHILDHOOD Gabriel DeYoung 11 Years Old THRIVES National Institute of Allergy and Infectious Diseases (NIAID) Gabriel and his mother, Emily “His health condition doesn’t define him.” Every summer since 2010, Gabriel DeYoung has “We are so grateful for The Inn,” says Gabriel’s Gabriel has known no other way of life than and they also enjoy a close relationship with Dr.

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