Another successful Bridging the Gap conference in the books!

Thank you to everyone who joined us for this year’s Spinal CSF Leak: Bridging the Gap 2025. Presented by Dr. Andrew Callen and the University of Colorado Anschutz Medical Campus in partnership with the Spinal CSF Leak Foundation, this conference welcomed hundreds of participants from the United States and other countries around the world.

This year’s fully virtual format allowed us to dig into new research with longer sessions, as well as expanded Q&As led by patient moderators. Thank you to everyone who submitted questions in advance and during the event, bringing us an extraordinary total of 332 thoughtful and insightful community questions. Your participation helped bring this event to life.

Even before our feedback email went out, we received your rave reviews about the barriers to care talk with Dr. Callen and Board President Jodi Ettenberg. Thank you for letting us know how meaningful that session was to you.

We extend our sincere thanks to the physicians and patient moderators who guided meaningful discussions throughout the day. We hope those joining us found the sessions informative and left with valuable updates on current research, clinical developments, and ongoing progress in the field.

For everyone who registered and attended, a feedback form has been sent to your email. If you didn’t receive it or are unable to locate it, please send us a message at [email protected].

Once the session recordings have been received and edited, they will be available on the Foundation’s YouTube channel in early 2026.

Our survey on barriers to care is now open

We are pleased to share that the path to care survey mentioned by Dr. Callen and Board President Jodi Ettenberg during the conclusion of their Bridging the Gap 2025 discussion is now open.

For those who did not hear their talk, the Barriers to Accessing Care in Spinal CSF Leak survey aims to better understand the challenges patients face in getting diagnosed, accessing treatment, and receiving supportive care for spinal CSF leak. It was developed with early input from our patient community, and created by Dr. Callen in collaboration with the Spinal CSF Leak Foundation.

If you have a suspected or confirmed spinal CSF leak, we invite you to participate. The survey is intended only for individuals with spinal CSF leak, not cranial CSF leak. If you have both types of leaks, please respond only as it relates to path to care for your spinal CSF leak.

All responses are anonymous, and results may be shared in academic publications and presentations to help improve care pathways.

Building connections: NORD meetings & summit

Last month, the Spinal CSF Leak Foundation was honored to take part in several events hosted by the National Organization for Rare Disorders (NORD) in Washington, D.C., including the Annual Membership Meeting, the NORD 2-day Summit, and the IAMRARE® Registry Leaders Community Meeting.

Our Executive Director, Olivia Chelko, represented the Foundation and connected with other patient advocacy organizations at all stages of the registry process, including groups already publishing studies from their data.

Sessions included discussions on effective registry marketing, strengthening patient engagement, leveraging academic and industry collaborations, and developing strategies for long-term registry sustainability. We are proud to be in the final stages of our international patient registry, the ileak registry℠, on NORD’s IAMRARE® platform. NORD supports more than 70 patient-powered natural history studies, representing more than 140 rare conditions.

The two-day NORD Summit featured inspiring conversations about the next generation of rare disease advocates, the importance of mental health and caregiver support within the rare condition community, and policy efforts at both the state and federal levels.

It was a meaningful week of learning, collaboration, and connection with the NORD registry team and rare condition leaders across many fields.

Giving Tuesday: a global day of generosity!

With Giving Tuesday fast approaching on Tuesday, December 2, we are launching our campaign early and inviting our community to join us in supporting the work of the Spinal CSF Leak Foundation. Share our mission within your own networks and circles. Let others know what the Spinal CSF Leak Foundation means to you and invite them to support this work alongside you.

Next week, we will begin releasing videos from the 2025 Intracranial Hypotension Conference hosted by Cedars-Sinai, Duke University, University of Freiburg, and University of Amsterdam. Your donations funded the educational grant through which we receive these conference talks to share on our YouTube channel, ensuring the latest clinical insights reach our community.

Donations fund not only these educational grants, but also our annual Bridging the Gap conference, our upcoming international patient registry, and they contribute to research projects throughout the year.

Our goal this Giving Tuesday is to raise $5,000 dollars to support continued education, research, and community programming. Every donation, no matter the size, strengthens our ability to advocate, inform, and advance progress.

You do not have to wait until Giving Tuesday. You can make your gift today and help launch this year’s effort.

Message of thanks from our Board and staff

As many in the United States prepare to celebrate Thanksgiving this week, we are reflecting with deep gratitude on the heart of our work: patient-driven research and patient-led programming. With a Board of Directors composed entirely of leak patients, we share a meaningful bond with this community — one that is grounded in understanding and lived experience. We are profoundly thankful for the voices, time, insight, support, and skills you have shared throughout the year to help move our mission forward.

We are also grateful for the physicians, researchers, and industry professionals who listen to patients, learn from their experiences, and apply that knowledge to improve care, advance science, and strengthen outcomes for our community.

This community thrives because of the shared commitment of patients, caregivers, healthcare professionals, researchers, and industry partners who continue to show up and advocate for one another. Together, we make the journey a little easier, and that is something truly worth being thankful for this season.

For all who celebrate, we wish you a warm and low-pain Thanksgiving season.

Warmest regards,
The Spinal CSF Leak Foundation

Do you know about our Inspire community? It is almost 16,000 members strong!

Looking for support or connection with others who understand life with a spinal CSF leak? The Spinal CSF Leak Inspire Community continues to be a meaningful hub for connection, learning, and peer support. With 15,698 members, including more than 4,000 participants from outside the United States, this online community is growing rapidly and remains an important space for patients and caregivers to share experiences.

This space is strengthened by a small group of volunteer Community Leaders, who help guide conversations, share resources, and ensure the community remains welcoming and supportive for everyone. Their ongoing commitment plays a key role in keeping Inspire a place where people feel understood and informed.

If you aren’t a member yet, we hope you’ll join us there!

New consensus guidelines related to brain and spine imaging in SIH

And before you go: in case you missed it, on November 20, 2025, the American Journal of Neuroradiology published consensus guidelines on diagnostic imaging in Spontaneous Intracranial Hypotension (SIH), from experts in radiology, neurosurgery, neurology, and anesthesiology — including many members of our Medical Advisory Board.

This paper provides recommendations and statements to guide physician practice and care for SIH across North America.