Downtown Silver Spring-based United Therapeutics today announced it has partnered with former NFL player Devon Still and his daughter Leah, a survivor of high-risk neuroblastoma, to launch the educational initiative Braving NeuroBLASToma.
The initiative, launched during National Childhood Cancer Awareness Month, aims to shine a light on neuroblastoma, a rare childhood cancer affecting immature nerve cells called neuroblasts. Neuroblastoma often develops in infants and children under the age of five, but the average age of diagnosis is between one and two years old.
According to Cancer.Net, approximately 800 children are diagnosed with neuroblastoma, accounting for seven to ten percent of all childhood cancers in the U.S. At the time of diagnosis, nearly 70 percent of children will have advanced or metastatic neuroblastoma, with only half of these patients achieving remission. Neuroblastoma can start to form in several places including near the abdomen, spine, chest, or adrenal glands.
“When I first learned that Leah had high-risk neuroblastoma, the sense of fear and helplessness was so overwhelming that I struggled to know where to begin,” said Devon Still in a statement. “Over the years, so many in the childhood cancer community have shown us how much they care each and every step of the way, from making the tough decisions to ensuring Leah’s comfort while undergoing treatment. Partnering with United Therapeutics enables us to share our personal experiences with braving neuroblastoma and lend others the support we so generously received throughout the years.”
- A family-friendly toolkit with a resource-rich website, including a comprehensive library of information and resources such as questions for the doctor, navigating clinical trials, understanding treatment, and caregiver advice.
- A series of four beautifully illustrated books, including the latest release of Zara Takes Off – inspiring hope and encouragement as families transition to life after treatment. The new release includes a personal foreword penned by Leah, sharing details of her personal journey.
- Each book highlights different stages of the high-risk neuroblastoma journey, beginning with The Big Adventures of Little Skivolo that helps families understand diagnosis and treatment, The Next Big Adventure of Little Skivolo that focuses specifically on the antibody therapy phase of treatment, Little Skivolo’s Big Book of Fun, an activity book to help entertain kids and families during hospital stays and culminates with Zara Takes Off.
“For many years, United Therapeutics has been working with leading researchers in pediatric neuroblastoma, including the Children’s Oncology Group supported by the National Cancer Institute, to bring hope to thousands of families fighting this deadly childhood cancer,” said Karren Jackson, Oncology Program Head at United Therapeutics. “We are tremendously proud to partner with Devon Still and his daughter Leah to highlight what courage, resilience and support from loved ones can do for children and their families impacted by neuroblastoma.”
As treatment ends, families can start to transition out of treatment mode and into more familiar routines while the healthcare team continues to monitor the child’s recovery. Patients will continue to see their oncology team on a routine basis to monitor for long-term side effects and to ensure that the cancer has not returned, which requires continued vigilance.
“The treatment of a child with high-risk neuroblastoma challenges both patients and caregivers to their core, with each family enduring unique and evolving medical needs,” said Rochelle Bagatell, MD, Pediatric Oncologist, Children’s Hospital of Philadelphia, and Neuroblastoma Committee Chair for the Children’s Oncology Group. “As a care provider, I encourage families to leverage the resources available to them, so together we can ensure that each child receives the best care and support possible.”
United Therapeutics’ DDOMAL facility, located at the intersection of Spring St. and Cameron St. in downtown Silver Spring, produces Unituxin, a monoclonal antibody-based orphan drug treatment for pediatric neuroblastoma.
Photo courtesy Braving NeuroBLASToma/United Therapeutics