2013 Annual Report CONTENTS Message from the CEO ................... 1 Operational Highlights ................ 2–5 2013 Populations Served ................. 6 Donors .............................. .7–12 2013 Financial Information .............. 13 ii A Message from the CEO The journey for any not-for-profit organization can be challeng- ing, but it can also be the most fulfilling experience that one can take in life. As CEO of the Double H Ranch since its inception, I can genuinely state that our road to success has not been achieved without learning from our mistakes and identifying opportunities even through the hardest of economic times. Our organization met or exceeded all its goals in 2013. We achieved a balanced budget and our team did a commendable job in controlling expenses. We invested in several capital improvement projects with an emphasis on enhancing accessibility and safety. Through the efforts of our admissions team and Hospital Outreach Program, we saw a significant increase in camper referrals. Insuring that we provide the highest quality of program and medical services is paramount, and our outstanding regulatory inspections indicated that we operate an exceptional organization. We continue to focus on building sustainability and creating new leadership opportunities within the organization. Volunteerism continues to grow in strength and truly represents one of our main lifelines in fulfilling our mission. The Double H Ranch continues to invest in its marketing/com- munications strategies to build greater awareness throughout New York State. Our Corporate Partnership Program is growing and our committee structure is incredibly strong. We applaud the efforts of the not-for-profit sector and we are grateful that the community has embraced our mission for the long term. Childhood illnesses are not going to disappear and we need to preserve and expand the critical services that we provide on a year-round basis to children and families who are dealing with life- threatening illnesses. The Double H Ranch accomplished many wonderful goals in 2013, but we know that there is much more ahead of us. We have strong leadership along with a dedicated year-round team of staff and volunteers. There are many variables that distinguish us from other not-for-profits and we recognize that we have an obligation to help those in greater need. With deep appreciation, Max J. Yurenda, CEO/Executive Director 13 20 er m m u S 38,000 volunteer hours Volunteers contributed approximately 38,000 hours 73 volunteer volunteers volunteer session in total support to the summer program through general 220 80 nurses 7 traditional camp sessions and one alumni camp counselors session. Volunteers ranged in ages from 12–82. volunteer13 We had over 220 session counselors volunteer a doctors week or more of their time, 73 volunteer nurses, 13 volunteer doctors, and over 80 general volunteers for the summer season. As the needs of our children change and grow more intense, our staff are continually challenged to adapt all programs to meet our mission that all Medical children participate. From Archery, Equestrian, 13 Volunteer Physicians to the High Ropes Course every child has been • 2 physicians volunteering for more than one session afforded the opportunity to successfully participate • 5 sessions had more than one on-site physician in all activities. • Emergency Medicine physicians were paired with Pediatric Specialist Physicians 73 Volunteer Nurses • 12 new nurse volunteers • 5 nurses volunteering for more than one session • 20 volunteer pharmacists • 5 volunteer dieticians 2 W inter 20 13 Our 17th season of the Adaptive Winter Sports Program was another successful year for this one of a kind program. The snowy cold weather, along 28 with our quality snowmaking capabilities, allowed program days us to be open for all 28 program days from January through March. lessonstaught to parents 1,200 We served approximately 180 qualifying students served 180 and taught an additional 1,200 lessons to parents and siblings students and siblings through our Family Weekend Programs. We did see a slight decrease in participants in 2013 and have addressed this with a formal recruitment volunteers245 winterdedicated plan in the fall. Our admissions staff have identified 18,000 service hours opportunities to serve more children with visual impairments, physical disabilities and autism next winter season. A total of 245 winter volunteers participated in 2013 and dedicated a combined 18,000 hours of volun- teer service. We saw an increase in new volunteer instructors in 2013, but saw a lower percentage of volunteers not retained from years past. 3 FAMILY BASED PROGRAMS 3 01 Fal 2 l 2 g 0 in 1 r 3 p S Mitochondrial Family Weekend added in 2013 Over 100 individuals & 31 childrenthe Hematology served in Oncology program Through our great partnership with Albany Medical Center we were able to exceed our goals for the Hematology Oncology Program serving over 100 individuals and 31 Double H added a new family weekend for the children with qualifying diagnosis. AMC also provided a fall of 2013, Mitochondrial Family Weekend. This is volunteer PICU Physician and Hospitalist, as well as nurses. a diagnosis served in our summer program and one with little support for camp programs and family Hematology Oncology retreats within our community. This weekend is Bravehearts operated with medical support from an Albany Diabetes Medical Center physician. Cindy’s Comfort Camp Rosie’s Memorial Mitochondrial Weekend (NEW in 2013) Bravehearts Cindy’s Comfort Camp Spina Bifida Family Weekend 4 HOSPITAL OUTREACH PROGRAMS parents/guardians720 introduced to 1,065 patients Hospital served Outreach 2013 Hospital Partners New York • The Children’s Hospital at Albany Medical Center 135 • Golisano Children’s Hospital, SUNY Upstate volunteers 272 Medical Center siblings • Golisano Children’s Hospital, University of & child visitors Rochester Medical Center • Mary M. Gooley Hemophilia Center of Rochester • Teens Living with Cancer, Melissa’s Living Legacy Foundation • Women & Children’s Hospital of Buffalo In the third year of this program, Double H New York City Area achieved the following milestones: • Jacobi Medical Center • 1,065 patients served through direct program • NYU Langone Medical Center services • Steven and Alexandra Cohen Children’s • 272 siblings/child visitors participated Medical Center • 720 parents/guardians exposed to the program • Brookdale University Hospital and Medical Center • 20 different hospitals were served with a total of 70 hospital visits New Jersey • 135 volunteers supported the program in various • Children’s Hospital of New Jersey at Newark Beth hospitals in the Northeast Israel Medical Center • The Joseph M. Sanzari Children’s Hospital at Hack- The program has allowed us to build awareness ensack University Medical Center with many new hospital partners, which will in • The Bristol-Myers Squibb Children’s Hospital at turn build census within our summer and fam- Robert Wood Johnson Hospital ily programs and awareness within the medical • K. Hovnanian Children’s Hospital at Jersey Shore community. The potential within this unique type University Medical Center of program is a great opportunity for the organiza- • St. Barnabas Medical Center tion. We are currently • St. Joseph’s Children’s Hospital assessing needs within our hospital partners Pennsylvania and creating a long • Children’s Hospital of Philadelphia range plan for growth • St. Christopher’s Hospital for Children that is sustainable. • Penn State Hershey Children’s Hospital New Hampshire • Children’s Hospital at Dartmouth-Hitchcock Medical Center 5 2013 Populations Served SUMMER PROGRAM Rare Disorders 6% 2013 Summer Diagnoses Served Other Diseases 1% Blood Disorders Hemophilia ..............................................................................10% Neuromuscular Sickle Cell Anemia ...............................................................35% Mitochondrial Disease 2% Disorders 18% Hemophilia Other Blood Disorders .......................................................... 7% Immune Disorder 6% 10% Cancer .................................................................................................. 7% Crohn’s & Colitis ............................................................................. 2% Collagen Vascular.......................................................................... 6% Collagen Vascular 6% Sickle Cell Anemia Immune Disorder ........................................................................ 6% Cancer 7% 35% Crohn’s & Colitis 2% Mitochondrial Disease ............................................................... 2% Neuromuscular Disorders......................................................18% Rare Disorders ................................................................................. 6% Other Diseases ............................................................................... 1% Other Blood Disorders 7% 2013 Summer Top 5 States Served VT New York ..........................................................................................75% 4% New Jersey ......................................................................................11% NY AZ 75% Pennsylvania .................................................................................... 6% 4% Vermont .............................................................................................. 4% Arizona ...............................................................................................