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Improving Outcomes for All Children with Cancer

There have been great strides in childhood cancer research in the last 50 years, but there’s still a need for quicker progress to improve outcomes for all children with cancer. To give every child the best future possible, we’re doing the critical research needed to accelerate that progress by sharing data, advancing clinical trials, making treatments less toxic, and working to better the quality of life for patients and survivors.

From left, Dr. Nirali Shah, Frank Jesús Colón-Matos, Roger Holzberg, and Katy Donahue.

Credit: National Cancer Institute

Dr. Nirali Shah

Researcher working on innovative new therapies to treat childhood cancers more effectively

Dr. Nirali Shah knew she wanted to study childhood cancer when she was just 10 years old, after a math-a-thon hosted by her school to raise funds for St. Jude Children’s Research Hospital. Learning how devastating childhood cancer can be, she felt this was where she could really make a difference. Today, she’s fulfilling that goal as a Lasker Clinical Scholar and NIH Distinguished Scholar helping lead critical childhood cancer research at NCI and treating children with high-risk leukemias and lymphomas with immunotherapy. Inspired by the resilience of her patients and the deep commitment of professionals in this field, Dr. Shah continues her work to make immunotherapies more effective while reducing their toxicity. Affected by each patient, she remains motivated to improve outcomes for families and has great hope for the future of research.

Frank Jesús Colón-Matos

Camp Fantastic counselor who helped give children with cancer a great summer camp experience

Helping an 11-year-old learn Spanish. Doing makeup and nails with another. Letting kids have fun and be kids. That was Frank Jesús Colón-Matos’s goal as a counselor at Camp Fantastic, a weeklong summer camp for children with cancer, complete with on-site medical care. Colón-Matos has a passion for improving the quality of life of cancer patients and survivors that comes from personal experience. He’s a survivor of childhood leukemia and believes activities like Camp Fantastic are an important means to connect researchers with the lived experiences of patients and survivors. As a postbaccalaureate fellow in NCI’s Intramural Continuing Umbrella of Research Experiences (iCURE) program, Colón-Matos analyzes genomic data from lung cancer in never-smokers. When he takes a break from his data, he might be found volunteering for other cancer events, like the Relay for Life.

Designed by Roger Holzberg, the Infusionarium uses immersive video technology to help create a less stressful experience for children undergoing cancer treatment. 

Credit: Photo courtesy of Roger Holzberg

Roger Holzberg

Innovator using immersive technology to transform the hospital experience

After being treated for thyroid cancer and seeing a need for an improved patient experience, award-winning innovator Roger Holzberg left his VP role at Walt Disney Imagineering to use “experience design” to help patients and families navigate the journey from diagnosis to well-being. As cofounder of Reimagine Well, he created the Infusionarium platform, used at over 35 hospitals and treatment centers, where children undergoing cancer treatment are asked, “where would you choose to heal?” Using virtual reality and live events, children are immersed in whatever setting they find most comfortable—swimming with dolphins, flying without wings, on safari in Africa, or even touring the International Space Station. In his continued efforts to improve the patient experience, and especially help kids feel more comfortable during a challenging time, Holzberg also developed “experiential education” programs that help patients relax before procedures to reduce the need for sedation.

Katy Donahue

Childhood-cancer-survivor-turned-advocate and pediatric oncology nurse practitioner

Katy Donahue knows what it feels like to be a kid going through cancer treatment. Diagnosed with an osteosarcoma nearly 40 years ago at age 3, Donahue received chemotherapy and a then rare, now standard limb-sparing surgery. She’s been cancer free since but still fondly remembers her nurses—including one who, on her day off, brought a therapy dog to visit after Donahue said she missed her own dog. This gesture meant the world to her, and as a nurse practitioner, she too strives to make her patients’ experiences more comfortable. Sometimes she might color pictures with a child or chat about their favorite superheroes. She’s also an advocate, serving on NCI’s Pediatric and Adolescent Solid Tumor Steering Committee and, in her new role as an adolescent and young adult (AYA) cancer nurse practitioner, is growing efforts to improve AYA cancer care in the Washington, DC area.

From left, Dr. Douglas Hawkins, Dr. Malcolm Smith, and Michelle.

Credit: National Cancer Institute

Dr. Douglas Hawkins

Head of the world’s largest pediatric research organization working to prevent and cure childhood cancer

With a pediatrician father and a pediatric nurse mother, it’s no wonder that Dr. Douglas Hawkins became a pediatrician too. Witnessing the challenges in pediatric oncology firsthand during his training, he set out to help and in the 31 years since, he’s cared for thousands of children with cancer. Throughout his career, both the triumphant moments—like treating a teenager with metastatic Ewing sarcoma who went on to be his son’s college calculus professor—and the times when treatment was unsuccessful keep him motivated to continue this work. As Chair of the Children’s Oncology Group, Dr. Hawkins oversees the group’s main priorities: to improve childhood cancer survival rates, improve quality of life for survivors, and make treatment less toxic. Equally essential, he emphasized, is ensuring that all children with cancer have access to treatments regardless of where they live or receive care.

Dr. Malcolm Smith

Leading data initiatives and fostering collaborations to address challenges in developing new therapies for children with cancer

Dr. Malcolm Smith shares a mission with colleagues within and outside of NCI: to improve the way childhood cancers are treated and help children survive and experience a better of quality of life into adulthood. With these goals in mind, he’s spent more than 30 years developing NCI’s childhood cancer research programs as a scientific liaison to the Children’s Oncology Group, NCI program director for the Pediatric Preclinical in Vivo Testing Program, and codirector of TARGET and the Fusion Oncoproteins in Childhood Cancers Consortium (among other leadership positions). These programs bring together outstanding researchers to make discoveries using state-of-the-art methods with the goal of finding more effective treatments for children with cancer. Committed to fostering collaboration between researchers, families, and advocates, Dr. Smith also promotes work happening across NIH and the childhood cancer community to ensure that promising basic science developments are translated from the lab and made available for children in the clinic as quickly and safely as possible.

Michelle

Survivor who participated in an NCI clinical trial and is now cancer free

Would the treatment be successful? What would it be like being so far from home? Michelle was preoccupied by these questions as she flew from Ecuador to the United States to get a desperately needed bone marrow transplant. Michelle was focused on finishing college and building her future when she was diagnosed with Hodgkin lymphoma. After relapsing three times, a transplant was her last option. The procedure was unavailable in Ecuador, so she turned to an NCI clinical trial. While in the United States for the transplant, she stayed at The Children’s Inn at NIH, a place she credits with making her feel at home and cared for while she recovered. This year, Michelle received the news she’s been waiting for: She is cancer free. Determined to live her life with purpose, she’s back to doing what she loves and wants to spread the word about clinical trials in her country.

A national commitment to ending cancer, including childhood cancer, began in earnest with the signing of the National Cancer Act of 1971. Find out more about the act.

50 Years of Childhood Cancer

The early fight against childhood cancer helped spur support for the National Cancer Act of 1971, and in the decades since NCI has been working to help the cancer research community understand the unique conditions, challenges, and treatments for childhood cancer. Listen to Healthcast’s National Cancer Act podcast series to learn more.