As challenging as 2023 has been, beginning as it did with the loss of our board member and tireless spinal CSF leak advocate Amanda J. Pickard, it has also been incredibly rewarding to see the progress being made in spinal CSF leak education, research, and awareness.
Here’s just some of what we were able to accomplish this year:
– We continued to update our growing library of curated abstracts with new and exciting research papers on spinal CSF leak
– We shared patient stories about the experience of having a spinal CSF leak, the challenges and triumphs of parenting while ill, and more
– We shared resources on learning to adapt and cope with spinal CSF leak to help patients manage their condition
– We launched a new podcast to talk about the emotional reality of life with a leak and the many challenges that occur alongside it
– We championed “starting where you are” with our annual #duradash virtual activity challenge, showcasing people’s efforts in special spotlight features, and celebrating everyone’s achievements during the challenge with our #duradash awards
– We collaborated on another incredible international leak week with our friends at Spinal CSF Leak Canada and the CSF Leak Association, and were able to share a powerful look at the daily reality of life with a leak from folks around the world in our collaborative project #theviewfromhere
– We supported several conferences this year with Foundation grants, and funded attendance for two physicians to support their continuing education in the field
– We celebrated groundbreaking research funded by your donations and engaged our patient advisors in supporting research endeavors
– We welcomed two new advisors to our medical advisory board
– We announced the development of our new spinal CSF leak patient registry, in partnership with the National Organization of Rare Disorders
– We shared in-depth interviews with experts about their recent publications
– We strengthened our online support community and watched it grow to over 12,800 members strong
– We cheered people on as they raised awareness locally, including via golfing events, enduring friendships, and long-distance races
– We increased our advocacy efforts: We sent more patient advocates to Headache on the Hill; we surveyed our community—both patients and physicians alike—about what’s most important to them, which helped us identify the biggest barriers to care; we launched a clinician education initiative; and we awarded that initiative’s first grants
– We inaugurated our first annual “Bridging the Gap” conference, a unique event that brought patients and physicians together to share their experiences, wisdom, and insight into spinal CSF leaks.
But, most importantly, we had the support of people like you!
Thank you!