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Imagine the Day When Childhood Cancer Is History. Because We Made It History

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Imagine the Day When Childhood Cancer Is History. Because We Made It History 2013-2014 ANNUAL REPORT Imagine The Day When Childhood Cancer Is History. Because We Made It History. believe1 Scientists are turning up BREAKTHROUGH DISCOVERIES even as we turn these pages TABLE OF CONTENTS Letter From The Executive Director . 4 Our Story Begins . 6 2013 – 2014 Donors . 32 Financial Highlights . 60 Organization Information . 61 thank you We are extremely grateful to our partners who made this Annual Report possible . Our sincere thanks to Lynn Crow Photography and Standard Press for their generous donations of photography services and printing, allowing us to report to you, our donors, the impact of your support . LETTER FROM THE EXECUTIVE DIRECTOR Dear Friends, It is with great pride and humility that we present to you CURE Childhood Cancer’s 2013-2014 Annual Report . We are eager to share with you the incredible difference you made over the past 12 months for children with cancer and their families . With your help, we awarded nearly $2 .5 million in grants to support research initiatives all with the goal of improving survival for those battling childhood cancer . Funding was awarded to scientists at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, Winship Cancer Institute, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center and St . Jude Children’s Research Hospital . With our funds, the talented team of researchers tackled everything ranging from genetic testing and analysis to new drug therapies to survivorship issues . We funded clinical trials that are literally saving lives today . Supporting patients and their families is paramount to us, and you enabled us to do this well . In total, our busy patient and family services team-with the help of dedicated volunteers-served lunch and dinner to more than 8,000 hospitalized patients, parents, siblings and nurses . They delivered 1847 brown bag lunches-more than twice as many as last year!-to parents of hospitalized children in Atlanta and Savannah, more than 476 snack bags to patients and families in Atlanta, Savannah, Augusta and Macon and more than 210 toiletry bags . We distributed 236 CURE totes at diagnosis full of practical items and tips from other families who have walked the childhood cancer journey . We awarded 188 families more than $90,000 in emergency financial assistance, and 46 families $15,000 in transportation assistance . We distributed an additional $21,950 in gas, grocery and pharmacy cards to families in need . Families let us know the difference this support made to them . One mother wrote, “Many times I am still amazed at just how many tiny little connections we have with other families who have 4 CURE CHILDHOOD CANCER 2013-2014 ANNUAL REPORT experienced this same journey as we have . Then right there in the middle of all of it is CURE and you super awesome folks who have become our family as well ”. A father shared with us, “The day we got to the Aflac Cancer Center floor, a volunteer from CURE dished up a good Italian meal for me . I’m not sure I could have done it myself – my hands were shaky and I don’t think I had eaten in at least two days . Serving meals seems like such a little thing and it is such a big thing, in reality . I know CURE is much more than that, but it is a great hands-on service to the patients and family ”. We also hosted spectacular holiday parties in both Atlanta and Savannah and matched 66 donors with families needing holiday assistance . In February, we held our largest ever Weekend of Hope and Healing for families who have lost children to cancer, and last August, we held a marriage enrichment workshop for parents who have lost children to cancer . We launched a new counseling program, enabling families to receive professional counseling at minimal to no cost . Through all of our efforts, our ultimate goal is to cure a cruel disease and help our families through one of life’s most difficult trials . We can only do our work with the support of many, many people, organizations, groups and businesses . We are grateful you enable our work and grateful for the opportunity to be the instruments through which this important work is done . Thank you, from the bottom of our hearts for giving so much to CURE . With hope, Kristin Connor Executive Director 5 6 research CURE CHILDHOOD CANCER 2013-2014 ANNUAL REPORT The research for a cure is working DR AMATICALLY Not long ago, a cancer diagnosis was a death sentence for a child . Today, nearly 80% of children with cancer survive . The scientific progress is dramatic, considering the complex science of childhood cancers . There are many types and subtypes, each requiring specific research to develop the most effective treatment . Still, the relentless passion of scientists and their continuing breakthroughs aren’t just encouraging — they are creating new medical realities . More effective drug therapies . More clinical trials . More collaborative research by oncologists and scientists exploring different avenues to a cure . Cancer in a child is ferocious . But today’s growing scientific intelligence and better treatments can detect and kill cancer cells faster and more effectively . Without killing a child’s healthy cells . Scientists are outthinking the cancers in children . As always, this research is driven by funding . Your investment in CURE over the past year has funded the work and scientific advances of the brilliant, persevering researchers you will read about in this report . research 7 8 CURE CHILDHOOD CANCER 2013-2014 ANNUAL REPORT ANDREW’S story “We Had to Turn Our Fear of this Cancer into Fighting it, With All We Had.” — Andrew’s Mom A child’s health is always top-of-mind to parents . The would lose his hair . The three-year-old asked for a usual suspects-ear aches, tummy trouble and fever- popsicle . And, with that, we went forward ”. sound the alarm . But in June 2013, over the course of a long weekend, Andrew Hall’s health took a nosedive Andrew underwent a four-hour surgery to save him beyond that of a normal 11-month-old . He couldn’t from paralysis . Eight rounds of chemotherapy and hold a sitting position in the bathtub without toppling another critically delicate surgery to remove 90% over . When Andrew crawled, his legs dragged behind of the tumor followed . Like so many kids dealing him . His spunky little body went limp from the waist with cancer in the hospital, Andrew’s spunk inspired down . For Andrew’s parents, the terrible fear of the everyone every day . Lying on his back, stationary for unknown set in . ten days, Andrew’s response was to smile and wave in his belief that he was winning . Affirming that, tshirts At the ER, x-rays of Andrew’s hips and legs ruled reading “Andrew’s Waves of Courage” were printed out injury . But Andrew’s dad, Jon, asked for another for friends and family . x-ray because of a “bump” he saw on his son’s back . The x-ray starkly revealed a solid tumor growing Andrew is now two years old . He goes through around and into Andrew’s spinal cord . The pressure frequent scans as his parents wait and watch to see if on the spinal cord had finally, secretly, stopped any the tumor that remains in his little body is cancerous . movement of Andrew’s legs from the waist down . Andrew’s mom adds, “The support from our friends Andrew, barely into his brand new life, was diagnosed and family was amazing . CURE came into our lives with stage IV neuroblastoma . The boy’s mom and dad as soon as Andrew was diagnosed . They took care of were numbed by the raw reality that cancer had come us and graciously fed us in the hospital . They are an out of nowhere and now had a horrible grip on their amazing organization . We’ve already volunteered at tiny son . As his mom says, “Andrew trusted us with CURE and helped raise money to help other families his life . So now we had to stiffen and trust the doctors cope with a child with cancer ”. and God . We told Andrew’s two sisters that their little brother had cancer . The six-year-old asked if Andrew Yes, we’re all in this together . 9 OUR 2013-2014 RESEARCH PROJECTS The Lifesaving Research CURE Funded in 2013-2014 CURE Childhood Cancer funded nearly $2 .5 million in pediatric cancer research initiatives, representing the largest annual investment in the organization’s history . The grants supported 17 research projects at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta; MD Anderson Cancer Center; Memorial Sloan Kettering Cancer Center; St . Jude Children’s Research Hospital; and the Winship Cancer Institute of Emory University . The grants also bought imaging equipment and supported two research fellowships and a third, newly endowed fellowship at the Aflac Cancer Center . “Bench to bedside” our funding and clinical trials were a crucial focus of our funding . This type of research is imperative because most of the current drug therapies are designed for adult patients . Research is needed to understand the efficacy and safety for children . CURE’s 2013-2014 Research Initiative Included Support for the Following Research Projects: A renewed grant for work with combined A first-in-the-world A continuing Phase II A therapy trial study of drug therapies involving project testing the clinical trial using the drug PEG-interferon in pediatric the combination of therapeutic potential Abatacept to prevent acute patients with refractory and natural killers (NK) of NK (natural killer) Graft-versus-Host-Disease low-grade glioma (LGG) .
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