2019Annual Report BECAUSE IT TAKES MORE THAN MEDICINE

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.

Hope for Henry Foundation | 2019 Annual Report 13 Hope for Henry is Serving More Kids at More Hospitals

In 2019, Hope for Henry expanded its footprint from four to 10 hospitals, including: Children’s Healthcare of Atlanta/Egleston (Atlanta, GA), Children’s Healthcare of Atlanta/Hughes Spalding (Atlanta, GA), Children’s Healthcare of Atlanta/Scottish Rite (Atlanta, GA), Children’s Mercy (Kansas City, MO), Children’s National Medical Center (Washington, DC), Cleveland Clinic Children’s (Cleveland, OH), MedStar Georgetown University Hospital (Washington, DC), Sinai Hospital of Baltimore (MD), The Children’s Hospital at Montefiore (New York, NY), and The Children’s Hospital at St. Francis (Tulsa, OK). Within the first year of the rollout, we tripled the number of patients who benefitted from our novel patient incentive program.

All participants report being better motivated; parents report that their kids are happy; nurses and doctors routinely observe that patients in the program are more active participants in their own care and demonstrate increased motivation to comply with medical directives. Hospitals are also reaping the benefits as they reduce the number of readmissions and staff needed to execute medical care. Moreover, because particular procedures can be performed more efficiently, medical equipment is freed up for use by additional patients.

Demand for the program is clear. Its novelty and impact are attracting interest from hospitals across the country, eager to reap the benefits.

14 Hope for Henry Foundation | 2019 Annual Report In 2019, Hope for Henry Expanded its Footprint From Four to 10 Hospitals:

Children’s Healthcare of Atlanta/Egleston (Atlanta, GA) Children’s Healthcare of Atlanta/Hughes Spalding (Atlanta, GA) Children’s Healthcare of Atlanta/Scottish Rite (Atlanta, GA) Children’s Mercy (Kansas City, MO) Children’s National Medical Center (Washington, DC) Cleveland Clinic Children’s (Cleveland, OH) MedStar Georgetown University Hospital (Washington, DC) Sinai Hospital of Baltimore (Baltimore, MD) Cleveland New York City The Children’s Hospital at Montefiore (New York, NY)

The Children’s Hospital at St. Francis (Tulsa, OK) Kansas Baltimore City Washington

Tu s la

Atlanta

Hope for Henry Foundation | 2019 Annual Report 15 Demonstrating Leadership and Driving Change in Pediatric Patient Care

Hope for Henry’s innovative approach to changing how hospitals care for kids has led to numerous awards, including being recognized as one of the “Best of the Best” by the Catalogue for Philanthropy, as one of the “Heroes Among Us” by People magazine, and as an EXCEL award winner for Excellence in Nonprofit Leadership. Hope for Henry has also won top awards from Children’s National and Georgetown Pediatrics, among other accolades.

Hope for Henry’s leadership has been invited to share our work at preeminent conferences, including those presented by the Association of Child Life Professionals, Cleveland Clinic’s Institute for Innovation and Empathy, International Child Advocacy Network, The National Council on Family Relations, and Stanford Medicine X, among others. In addition, PBS NewsHour aired a lengthy feature on the program and ABC News Nightline plans to do the same in the coming months.

16 Hope for Henry Foundation | 2019 Annual Report Meet Hope for Henry’s CEO

Laurie Strongin is founder and CEO of the Washington, DC-based Hope for Henry Foundation, which is reinventing the pediatric patient experience in hospitals around the country. Laurie’s work with Hope for Henry and the memoir she published, “Saving Henry,” have placed her at the forefront of supporting the rights of patients and their families and the responsible use of new medical technologies. Laurie’s advocacy has led her to serve on the nation’s preeminent science policy and bioethics panels. Her activism has produced op-eds in national newspapers; appearances on television and radio; collaborations with Congressional leadership; and recognition from the White House. An in-demand inspirational speaker, Laurie has been featured as a People magazine “Heroes Among Us” and was the subject of profiles in USA Today and the Washington Post, and on Good Morning America.

Laurie serves on the board of directors of the National Marrow Donor Program/Be the Match, which has facilitated almost 90,000 transplants through managing the largest and most diverse stem cell registry in the world. She also served on the Advisory Committee to Disney’s “Team of Heroes,” a $100 million commitment to improving the quality of care for hospitalized children; and on the Advisory Committee of the Association of Child Life Professionals.

Hope for Henry Foundation | 2019 Annual Report 17 2019 Lee Bennett Shelly and William Coates Jordan Edwards Gates Foundation Audrey Heckaman Sylvia Kerpel Stefanie Lukasko Christy and Larry Murray Stephanie and David Bergman Matthew Cohen Sophia Egge Naomi Gelfand Beth Heifetz and Glenn Fine Martin Kerpel Audrey Lung Jess and Drew Murray Donors Jeannien and Michael Berkman Nancy Cohen Natalie Ehredt Victoria Gelfeld Juliet and Scott Heimberg Dee Kerr and Joe Beshori Lupo Verde Osteria Elizabeth and Matthew Murray Lois Berkowitz Mark Cohen Regina and Gregg Eisenberg Geraci’s Restaurant Leora Henkin Frances Kessler and Jack Finkelstein Luster A Gift Boutique Vicki Muschkin $1-$499 Jonah Berman Rebecca Cohen Rona and Gilbert Eisner Alexander Gerszten Tamara Henkin and Michael Rae Donna and Rich Khalil Thomas Lydon Jada Mutic 2 Amy’s Neapolitan Pizzeria Barbara and James Bershon Laura Cohen Anna El-Eini and Jim Whitman Giant Food Charlotte Henry Paul Kidwell Janice and Michael Lyons Christopher Myers 50 West Vineyards Kristen Best Kathy and Jeff Cohen Billy Elgert Monica Gilbert Jacqueline Henry Anastasia and Eliot Kijewski Yulia and Leonid Lyublinski Annalise Myre Brooke Abel Bethesda Bagels Lynne and Philip Cohen Dinora and Chris Eli Jessica Gilbertsen Katherine and Gregory Herceg Jonathan Kimball Tali Mackay Gayle and Andrew Nadler Marsha Abrams Bethesda Crab House Elana Cohen and Steve Schwartz Paul Elia Susan and Jake Gillespie Oscar Hernandez Kimpton Glover Park Hotel Arad Maghouli Beth Naftalin Louis Abrams Jon Biedermann Danielle Collins Nicole Elkon and Neal Wolin Andrea and Scott Gillman Chris Hertz Missy and Bill Kincaid Mai Mai Tanvi Nagpal and Dan Hanfling Sandy Abramson Mara Bier Colorado Avalanche Mo Elleithee Jon Glassman HG Yoga Melissa King Christina Mai Nando’s Peri-Peri Chicken Rebecca and Alberto Acosta Biker Barre Colorado Rockies Lindsay Ellenbogen Lisa and Peter Glassman Carletta Higginson Helene King Allison Malamut Raudel Napoles and Troy McCarty ADP Joseph Bilotta Randi Comack Sam Ellenthal Gina Glassman Sarah and Dean Hill Kings Gym Inc. 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18 Hope for Henry Foundation | 2019 Annual Report Monica and Lee Ponsky Elizabeth Ross James Smith Tuckernuck Inc. 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Nemer Hand & Stone Susan Baer and Mike Abramowitz Mickie Simon and Brian Schwalb Linda and Douglas Preiser Paula and Lee Rubinstein Claire Snyder Whitney VanMeter Yolanda Ali Ellen Nissenbaum and Jeff Colman John Harris Baird Foundation sshape Nancy Prendergast Craig and Carmen Ruch Jane and David Snyder Frankie Velez Allen & Rocks, Inc. Northrop Grumman Charity Trust Account Kristie and Dan Helfrich The Banner Team of Long and Foster Real Stephen A. & Diana L. Goldberg Foundation, Inc. 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Hope for Henry Foundation | 2019 Annual Report 19 Board of Directors

Honorary Chair: Abeer Shoukry, Allen Goldberg, Senior Vice Laurie Strongin, CEO, Hope for Business Woman and Philanthropist President of Communications, Henry; Author, Saving Henry Association for Accessible Medicines Lauren Aronson, Partner, Mehlman Susan Toffler, Media Strategist Castagnetti Rosen & Thomas Steve Hubberman, Vice Chairman, Washington, DC Region, Colliers Jason Belinkie, Chief Operating International MEDICAL ADVISORY BOARD Officer, Athletes for Hope Sara Just, Executive Producer, PBS George Hwang, MD, Assistant Michelle Belinkie, Business Woman NewsHour Professor and Endoscopy Division and Coach Chief, MedStar Georgetown Jonathan Kaplan, Founder, Hines University Hospital Michael Blum, President and Point Advisors Co-Founder, Insight Property Group Aziza Shad, MD, Director, Ellen W.P. Rich Lane, Principal, West, Lane & Wasserman Endowed Chair & Salvador Briman, CEO, World Schlager Director of the Division of Pediatric Champions for Hope Hematology/Oncology, Herman & Richard Mintz, Principal, The Walter Samuelson Children’s Hospital Jonathan Evans, President & CEO, Harbour Group Bart & Associates Stacy Samet, Volunteer and Todd Foreman, Investor and Philanthropist Chairman of Hope for Henry’s Board of Directors Jamie Shor, President, PR Collaborative

20 Hope for Henry Foundation | 2019 Annual Report Financial Statements FISCAL YEAR 2019: JANUARY 2019 TO DECEMBER 2019

Total Assets $1,297,692 Revenue Total Liabilities $110,163 Total Net Assets $1,187,530 Total Liabilities & Net Assets $1,297,692

UNRESTRICTED RESTRICTED TOTAL Revenue Corporate 30% Individuals 37% Individuals $652,246 $102,324 $754,570 Foundations $413,552 $243,298 $656,850 Corporate $585,268 $15,846 $601,114 Foundations 33%

Net Assets Released from Restriction $359,025 ($359,025) ------Total Revenue $2,010,091 $2,443 $2,012,534

Expenses Expenses

Program Services $1,432,561 $1,432,561 Management & General 19% Supporting Services Fundraising $169,964 $169,964 Management & General $385,768 $385,768 Subtotal $555,732 $555,732 Total Expenses $1,988,293 $1,988,293 Fundraising 9%

Change in Net Assets $21,798 $2,443 $24,241 Program Services 72% Net Assets - Beginning of Year $860,692 $302,596 $1,163,288 Net Assets - End of Year $882,490 $305,039 $1,187,529

Restricted funds in excess of the expenses incurred during the current fiscal year will be utilized to offset expenses incurred in subsequent years. The financial records were audited by Gelman, Rosenberg and Freedman and their report is available from our office upon request.

Hope for Henry Foundation | 2019 Annual Report 21 Get Involved Today

Here’s how you can help: • Make Hope for Henry the beneficiary of your corporate giving. • Designate Hope for Henry as your charity of choice through the United Way, World Bank, or Combined Federal Campaign. • Collect and donate brand new, unopened board games, superhero action figures, or gift cards. • Donate online at hopeforhenry.org. • Host a fundraising event. • Follow us on social media.

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22 Hope for Henry Foundation | 2019 Annual Report Belt Body Heads Boots Legs Gloves hopeforhenry.org 2440 Wisconsin Avenue, NW | Suite 201 | Washington, DC 20007 | Tax ID: 20-0244173

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©2020 Hope for Henry Foundation. Hope for Henry, Hope for Henry’s Super Path to Super Duper Better, Hope for Henry’s Super Rewards for Super Kids, Hope for Henry Bucks, and Hope for Henry characters and related imagery are all trademarks of Hope for Henry Foundation.

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