Hope for Henry 2019Annual Report BECAUSE IT TAKES MORE THAN MEDICINE Dear Supporters, Garyn had his first major surgery when he was just two days old. But that Thanks to people like you, in 2019, Hope for Henry celebrated the incredible didn’t prepare him for his one-month stay at age four for a bowel transplant. accomplishment of serving our 45,000th patient — kids like Garyn whose Requiring extensive surgery, numerous medications daily to prevent organ lives are disrupted by illness for such long periods of time. It’s because of rejection, and many, many invasive scopes, the procedure was tough on people like you — who care about the sickest kids in our communities — Garyn. that we are now at 11 hospitals and able to serve exponentially more children every year to ensure that they are best-equipped to thrive during and long Thankfully, Hope for Henry was there every day, rewarding his courage and after treatment is over. tenacity with Hope for Henry Bucks. “As soon as he was alert after surgery, Garyn would open his eyes and ask if he had earned his ‘Henry Dollar,’” his Thank you for all your support for Hope for Henry and the kids and families mom Lydia relayed. Garyn traded his Bucks for LEGO sets, which helped keep we work with every day. We look forward to continuing to Heads share our him busy during his lengthy hospital stay, but just earning those Bucks was its successes with you. own reward. They made him feel brave and helped him do all the difficult Body things he needed to do to recover.” Belt With warm regards, Gloves Legs Boots Laurie Strongin Todd Foreman FOUNDER AND CEO CHAIRMAN Hope for Henry Foundation | 2019 Annual Report 3 The Boy Who Started it All Henry embraced each opportunity for living completely and reminded the rest of us to do the same. On October 25, 1995, Henry Strongin Goldberg was born. Two weeks later, he was diagnosed with Fanconi anemia, a disease that threated to take his life. His sparkly eyes, mischievous grin, and infectious smile were calls to action to smile back, laugh along, and dance with him. His boundless energy and indefatigable spirit were far more noticeable than his many surgical scars and low-platelet-related bruises. He suffered plenty of setbacks and spent more nights in the hospital fighting against whatever Fanconi anemia would throw his way. Just when it looked like the disease was too tough of an opponent, Henry would rise up and get back to the life he chose to lead. He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes. In trying to save Henry’s life, his parents, Laurie Strongin and Allen Goldberg, spent hundreds of nights in hospitals across the country. High-quality medical care treated Henry the Patient, but the needs of Henry the Kid went unmet. Laurie and Allen found that by giving Henry the chance to have a birthday party in the hospital, trick-or-treat in the hospital corridors, or meet his favorite superheroes not only brought normalcy to Henry’s life but also motivated him to get better and stay that way. On December 11, 2002, the unimaginable happened. Henry died. Recognizing the importance of optimism and play in the lives of seriously ill children, Laurie and Allen founded Hope for Henry in 2003. Since then, the stories of thousands of brave kids, parents, and medical professionals have confirmed that original insight. 4 Hope for Henry Foundation | 2019 Annual Report Hope for Henry Foundation | 2019 Annual Report 5 Hope for Henry is Reinventing the Pediatric Patient Experience For 16 years, Hope for Henry has been singularly focused on reinventing how SPECIALIZED PATIENT EXPERIENCES hospitals care for seriously ill children and their families through innovative Young patients undergoing chemotherapy and radiation have compromised programs that entertain, reduce stress, and empower children to be active immune systems that prevent them from being around other children. They participants in their own care. miss out on too many “normal” childhood experiences. Hope for Henry host events every week throughout the year to ensure that these kids experience Hope for Henry’s year-round program has three primary components: wonder, even while in the hospital. EMBEDDED FULL-TIME CHILD LIFE SPECIALISTS Hope for Henry Certified Child Life Specialists provide therapeutic activities and psychosocial and developmental support to help patients and families cope with stress and anxiety associated with traumatic health care experiences. INNOVATIVE PATIENT-CENTERED PROGRAMS A diagnosis of cancer or other life-threatening illness brings with it a significant disruption to a child’s day-to-day life. School, sports, summer camp, and other activities are replaced by long, isolating hospitalizations and painful medical procedures that are a necessity on the road to recovery. To address fear, loneliness, and the monotony of the hospital stay, Hope for Henry has developed a suite of innovative patient incentive programs designed to give kids control where otherwise they have little to none and to increase adherence to lengthy, arduous medical protocols. Hope for Henry also has specialized programming like its themed birthdays-in-a-box and specialized room décor through its Room of Your Own program, both of which provide critical, longed-for normalcy and entertaining distractions while kids fight to get better. 6 Hope for Henry Foundation | 2019 Annual Report Hope for Henry Foundation | 2019 Annual Report 7 Why We Do What We Do - Kids Need More Than Medicine Hope for Henry is reinventing how hospitals care for seriously ill children and their families through innovative programs that entertain, reduce stress, and empower children to be active participants in their own care. 15,000 Every children in U.S. are diagnosed 15 minutes with cancer each year. It’s the #1 a baby is born in the US with cause of death by disease in congenital heart disease. children. 125,000 1,095 Medication nonadherence can is the average number of days of account for up to 50% of cancer treatment for children. treatment failures, around That’s nearly three years, an 125,000 deaths, and up to 25% of eternity for a child. hospitalizations each year in the United States. 8 Hope for Henry Foundation | 2019 Annual Report 4 9 , 4 6 5 3,059 1,67 4 Total Patients Served. Princesses, Superheroes, Pirates, Kids Who Have Celebrated their and More Who Have Trick or Birthdays in the Hospital. Treated and Visited Pumpkin Patches in the Hospital on 20,0 98 Halloween. Patients Who Have Benefitted from the Comfort, 5,534 Kids Who Met Batman, Wonder Care, and Compassion of Hope Woman, and other Favorite for Henry Child Life Specialists. 1,102 Superheroes. Patients Who – Because of Hope for Henry’s SuperGirl SuperFun Pamper Parties – Have Felt as 335 Beautiful as They Are! 72 Patients Who Improved Patients Who Have Had an Easier Adherence to their Medical Plans Adjustment from Home to Hospital Thanks to Hope for Henry’s Thanks to Hope for Henry + Innovative Incentive Programs. 2,554 Dormify’s Room of Your Own Patients Who Met Authors and Program. Have Benefitted from the Escape 1,511 of a Great Book. Patients Who Have Met and Gotten Signed Memorabilia from their Favorite Athletes. Hope for Henry Foundation | 2019 Annual Report 9 Spotlight on Four High-Impact, Innovative Programs HOPE FOR HENRY’S SUPER PATH TO SUPER DUPER BETTER Our groundbreaking pediatric patient incentive program improves coping skills and medical outcomes for kids whose serious, chronic illnesses require lengthy hospitalizations. As the kids accomplish their medical challenges, Hope for Henry rewards them with Hope for Henry Bucks, which they earn and exchange for gifts like the opportunity to meet their favorite athlete or attend exclusive concerts, or for gift cards, Nintendo Switches, and Lego sets – whatever will motivate them to do what they need to do to get better. 10 Hope for Henry Foundation | 2019 Annual Report Belt Body Heads Boots Legs Gloves HOPE FOR HENRY’S SUPER REWARDS FOR SUPER KIDS Child life specialists can help reduce the fear of the unknown but, until now, haven’t had proper tools to encourage patients to successfully complete their procedures in a way that provides the patient with a sense of accomplishment and improved coping skills that positively impact future treatments. Hope for Henry’s procedure-based incentive program helps kids navigate all the steps necessary to successfully complete challenging medical procedures like proton beam therapy, MRIs, central line dressing changes, port accesses, and more. Hope for Henry Foundation | 2019 Annual Report 11 Spotlight on Four High-Impact, Innovative Programs IT’S YOUR BIRTHDAY! FROM HOPE FOR HENRY Kids love birthdays. Before they even memorize their phone numbers or addresses, kids know the date of their birthday. They plan their parties —bowling, laser tag, dress up, sleepover — all year long and talk constantly about who to invite. No child ever plans to spend their special day in the hospital. That’s why we created “It’s Your Birthday! from Hope for Henry.” Hope for Henry has hosted over 1,600 birthdays for hospitalized children. 12 Hope for Henry Foundation | 2019 Annual Report HOPE FOR HENRY’S ROOM OF YOUR OWN Decorative pillows, plush bed blankets, colorful throw covers, fun wall decals, picture frames, and string lights are not the typical décor you think of when you envision the hospital room of a very sick child who needs extended care away from home. Now, thanks to a partnership with Dormify, children undergoing medical interventions requiring lengthy hospital stays can decorate their rooms, creating comforting, personalized spaces that help ease the difficult transition from home to hospital.