The Growing Spine Foundation
Growing Spine Foundation – A Worthy Cause for Young Children with Spine and Chest Wall Deformities
The Growing Spine Foundation (GSF) was established by Behrooz A. Akbarnia, MD in 2009.to support spine-related research and education which relates to young children. The foundation’s mission statement 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. Because the patient population is small, however, multi-center studies are required to evaluate these children more accurately and answer the clinically relevant questions. Unfortunately, due to the lack of financial incentive and ongoing issues with federal regulations related to pediatric research, grants are not readily available to support these projects.
The Growing Spine Foundation supports Growing Spine research and educational projects as well supporting the Growing Spine Study Group (GSSG), funded by grants from private and industry donations. With the combined efforts of the Growing Spine Study Group, data is gathering prospectively and different treatment methods from both past and present are compared. We hope to better evaluate the benefits of procedures that control scoliosis while allowing for growth of the thorax, lungs and spine over time.
The Growing Spine Research Project (approved by the Institutional Review Board of Rady Children’s Hospital and Health Center) involves our spine center as the primary and central location for data collection for multicenter studies of GSSG. Because data such as growth measurements are so critical and since accuracy is a must, all participating spine centers are visited and monitored by physicians and researchers on our staff to assure uniform radiographic and clinical data collection and recording. Our center is then responsible for the quality review and management of all data.
The Growing Spine Projects also include basic science research. This includes biomechanical studies as well as animal studies, which have been underway to develop new ways to treat the growing spine with less invasive techniques. We have learned much, but have just begun to scratch the surface. Contributions to the Foundation will support continued medical education and research towards improving the lives of our young children who suffer these life threatening conditions.
Inquiries regarding potential contributions should be directed to the Growing Spine Foundation Administrator, Pat Kostial, RN, BSN, at:
Pat Kostial, RN, BSN
Administrator
Growing Spine Foundation
6190 Cornerstone Ct. East
Suite 212
San Diego, CA 92121
Tel: (903) 383-7295
Email Pat Kostial RN, BSN
As a 501 c 3 charitable organization, we believe that our Foundation’s planned projects would fit both private and corporate requirements as worthy spine research for the benefit of our very young patients. Pat would be happy to send out the necessary tax forms and any additional information as needed. For more information about our Growing Spine Program, please contact our Administrator Pat Kostial, RN, BSN
