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April News from the Spinal CSF Leak Foundation
Spinal CSF Leak Foundation
April 11, 2024
In this newsletter: A brief round-up!
Here’s just some of what we’ve been up to in the past month, from raising awareness about spinal CSF leak and its effect on the brain, to advocating for people with headache disorders, to sharing an inspiring story about our first Clinician Education Initiative grantee.
Brain Awareness Week
During this international week dedicated to raising awareness of brain science and research, we shared information about spinal CSF leak and its effects on the brain, including:
Headache on the Hill
On March 19, the Spinal CSF Leak Foundation participated in Alliance for Headache Disorders Advocacy’s 17th Annual Headache on the Hill. Our advocates joined 275 others representing all 50 states to meet with our members of Congress. The goal was to advance policy proposals that ensure timely access to the treatments patients need and deserve, to make sure research is inclusive of all people impacted by headache disorders, and to ensure our veterans experiencing headache disorders are well taken care of. |  Advocates convening on the Captiol steps, courtesy of spinal CSF leak advocate Jodi Boos-Blaszyck |
Clinican Education Initiative: Dr. Sharath Kumar
Dr. Sharath Kumar had been a practicing neuroradiologist for nine years when he encountered the patient that would change his life.
She was 39 years old, presenting with severe pain in her neck and at the base of her skull, and no doctor had been able to help her. As Dr. Kumar listened to this patient and watched her suffer through her pain, he knew he had to do something.
After all—she was his little sister.
Read about Dr. Kumar’s inspiring story and his Clinician Education Initiative grant experience here.
⭐ OPEN ACCESS ARTICLES ⭐
Foundation medical advisor Dr. Simy Parikh’s new review article on Rebound Intracranial Hypertension offers insight into the interconnected nature of high and low intracranial pressure disorders. Read the paper in full here: Rebound Intracranial Hypertension.
Foundation medical advisors Drs. Ian Carroll and Andrew Callen’s editorial covering pivotal research on the topic of spinal CSF leak, spontaneous intracranial hypotension, and post-dural puncture headache over the past decade is available in full here: Beyond Myths: Transformative Insights into Spinal Cerebrospinal Fluid Leaks and Their Role in Persistent Headache Syndromes.
COMING SOON: Canadian SIH Conference
Register today for this one-day multidisciplinary hybrid conference for physicians, patients, and allied health professionals, organized by Spinal CSF Leak Canada in affiliation with the University of Toronto department of anesthesia and pain medicine. This event will take place on Saturday May 4, 2024, in-person in Toronto, but there is also an option for virtual attendance. Learn more about the event and register here!
We are so thankful for you!
As always, we are so grateful for your support of our mission. We are constantly inspired by the dedication and passion of our community. Thank you for all that you do to help us make a difference in the lives of people with spinal CSF leak!
💜 Your donations make our work possible! 💜
To donate, visit spinalcsfleak.org/donate