Growing Spine Foundation – A Worthy Cause for Young Children with Early Onset Scoliosis

The Growing Spine Foundation (GSF) was established by Behrooz A. Akbarnia, MD in 2008 to support spine-related research and education which relates to young children.  The foundation’s mission is to improve the global care of patients with Early Onset Scoliosis and other deformities related to the growing spine and chest through research, education and professional development.

Until recently, there were not many available options for the treatment of these young children and for the most part they had been ignored. Limited clinical studies exist, but many questions regarding prevention and treatment of severe deformities in children with immature spines remain unanswered. This group of children is often at greater risk for pulmonary complications and even premature death due to progressive scoliosis and its detrimental effect on lung development.

Under Dr. Akbarnia’s lead, the Scoliosis Research Society created a Growing Spine Committee, recognizing the urgent need for both basic science and clinical research in this area. Progress is being made in getting physicians interested in exploring current treatment methods and ways in which to improve them. However, because the patient population is small, multi-center studies are required to evaluate these children more accurately and answer the clinically relevant questions. Unfortunately, grants are not readily available to support these projects due to the lack of financial incentive and ongoing issues with federal regulations related to pediatric research.

The Growing Spine Foundation supports research and educational initiatives through the Growing Spine Study Group (GSSG). With the combined efforts of the Growing Spine Study Group, data is gathered prospectively on patients around the world and the effectiveness of all available treatment methods are evaluated.

Rady Children’s Hospital in San Diego, CA is the central location of the GSSG. All participating centers of the GSSG monitored by GSF research personnel to assure data accuracy and completeness.

Growing Spine projects also include basic science research. This includes biomechanical studies as well as in vivo studies, which have been underway to develop new ways to treat the growing spine with less invasive techniques. We have learned much, but we have long way to go to truly optimize patient care and quality of life.  Contributions to the Growing Spine Foundation will support continued medical education and research towards improving the lives of our young children who suffer these life-altering conditions.

In 2017, the Growing Spine Foundation celebrated its 10th anniversary by hosting a gala in conjunction with the annual International Congress on Early Onset Scoliosis in San Diego, California. Attendees and community members alike were invited to join in a night of celebration with dinner, a silent and live auction, and dancing. Over the course of the evening, an incredible $173,375 was raised to support medical education and scientific research to optimize the quality of life of children with Early Onset Scoliosis. Visit this page to view the video and photos, and to learn more about the 10th anniversary gala.