Chiari Malformation, Syringomyelia & EDS International Medical Conference Update

Buffalo, New York

Column of Hope – Chiari & Syringomyelia Research Foundation (COH), the Western New York based non-profit organization that funds research for Chiari malformation (CM) and syringomyelia (SM), announces the successful completion of the CSF Flow at Niagara Falls International Medical Conference at the Hyatt Regency in downtown Buffalo from June 25 - June 29, 2019.

Mark S. Kane, Column of Hope’s president, stated, “We were pleased to host an event of this magnitude which brought together CM, SM and EDS experts from 5 continents.” COH was joined by two other US based foundations, Conquer Chiari and ASAP. The ILC Foundation of Canada was also a conference sponsor. The program and speaker presentations were organized by Dr. Marcus Stoodley and Dr. Lynne Bilston, noted neurosurgeon and scientist, respectively. Both organizers hail from Sydney, Australia and have published a significant amount of breakthrough SM and CM work, much of which was funded by COH.

Stoodley and Bilston stated, “The conference involved excellent interaction and high-quality debate about both fundamental mechanisms of Chiari and syringomyelia, and issues for EDS patients. We reached consensus about some key areas in both clinical practice and research and laid out priorities for future research that will help resolve both how to treat these disorders, and why they occur.”

Dr. John Oró, a neurosurgeon from Aurora, CO, delivered the prestigious opening presentation of the conference. Dr. Oró stated, “(the) conference (with a patient interaction meeting), had the mix of strong science, practical knowledge, and social interactions that I found very nourishing. Certainly, a broad and deep meeting. The overarching plan developed by all the organizers is certainly at the core its success. Participants from throughout the globe widened the Chiari perspective as well as outlined future challenges. It was a privilege to participate!”

Five of the experts, including University at Buffalo neurosurgeon Renée Reynolds, remained an extra day to present to 75 patients and caregivers from the US and Canada. The medical conference was summarized, and questions previously submitted by patients and caregivers were answered. The expert panel also solicited input from the audience. Dr. Reynolds stated, “it was a great morning all around.”

With over 300,000 Americans suffering from these painful and debilitating conditions, patients are relying on private research foundations such as COH to help find cures. As COH prepares for its annual gala on October 26, 2019, Dr. Stoodley acknowledged the tremendous amount of research funds for CM and SM that has been generated by dedicated COH supporters in past years. For more information, visit www.columnofhope.org or email info@columnofhope.org.

Column of Hope – Chiari & Syringomyelia Research Foundation is a tax exempt, 501(c)(3) organization dedicated to searching for better understanding, treatments and cures for Chiari malformation, syringomyelia, neuropathic pain, spinal cord injury and related conditions.