Update on Spinal CSF Leak: Bridging the Gap 2025

The Spinal CSF Leak Foundation, in partnership with Dr. Andrew Callen and the University of Colorado Anschutz Medical Campus, is pleased to announce this year’s Spinal CSF Leak: Bridging the Gap 2025 conference.

The theme for 2025 is “Making the invisible visible.” The conference program is designed to foster meaningful dialogue between patients and physicians through expert presentations, question-and-answer sessions, patient stories, and patient moderators who will help guide the conversation with the patient perspective in mind.

This full FREE conference will be held virtually on November 15, 2025.

Join us in November to help us make the invisible visible!

Welcoming our new Executive Director, Olivia Chelko!

We are excited to announce Olivia Chelko as the new Executive Director of the Spinal CSF Leak Foundation. Olivia brings over 20 years of experience leading healthcare nonprofits with a strong focus on patient-centered care, strategic growth, and community-driven impact.

At the Foundation, Olivia will lead major initiatives including physician and community education, advocacy, and long-term sustainability. Her experience in fund development, grant management, stakeholder engagement, and impact reporting will help strengthen our mission and broaden our reach.

Olivia brings deep experience in advocacy at the local, state, and national levels, including HIV advocacy where she worked with Patient and Community Advisory Boards and university-based researchers to advance care, treatment, and vaccine development. She has led organizations focused on HIV, homelessness, domestic violence, and childhood injury prevention, always centering the needs of vulnerable and often unheard populations. Her work is rooted in a deep commitment to elevating patient voices and ensuring they shape programs, essential services, policies, and systems of care.

She has also worked closely with nonprofit boards as both an executive and member, leading statewide coalitions, securing funding, building strong teams, and advancing systemic improvements across healthcare and human services.

She joins the Foundation at a pivotal time of growth and her leadership will help drive lasting change for patients, families, clinicians, and the broader spinal CSF leak community.

Intracranial Hypotension Conference 2025 round up

In June, the 2025 Intracranial Hypotension Conference took place in Amsterdam, and the Spinal CSF Leak Foundation was proud to participate. Two of our Board members, whom are spinal CSF leak patients themselves, were on-site to represent the patient voice, share perspectives, and bring back valuable insights to our community. They also captured photos and highlights from across the weekend.

This two-day international meeting was presented by Cedars-Sinai, Duke University, University of Freiburg, and University of Amsterdam. The program featured a wide range of topics, from clinical presentation and diagnostic challenges to emerging treatments and international collaboration in spontaneous intracranial hypotension (SIH) research and care.

For those interested in seeing some slides from the talks, have threads on X/Twitter in real time: see our thread for Day 1 and our thread for Day 2.

Some photos from the event:

As part of our educational grant supporting this event, the Foundation will be receiving all the conference talk videos and uploading them to our YouTube channel. We look forward to sharing them with you when they’ve been edited and processed.

We are grateful to the organizers and presenters for advancing knowledge in this field and for their commitment to improving care for patients worldwide.

Upcoming survey about access to care: open call for questions!

The Foundation is preparing to launch a survey focused on barriers to healthcare access and the challenges faced by patients living with spinal CSF leak. The goal is to better understand the factors contributing to delays in treatment, as well as the types of support needed for activities of daily living and basic needs. This data will help highlight the day-to-day realities of living with this condition.

Before finalizing the survey, we want to hear directly from our patient community. Your input will help ensure that we are asking the right questions and capturing the issues that matter most to you.

If you are a spinal CSF leak patient, whether in the United States or internationally, we invite you to share your feedback and submit survey questions using this form:

This was initially shared on September 3rd via our social platforms and online groups, but we are including it here to bring it to our newsletter subscribers so we can reach as many people as possible. The full survey will be released later this autumn.

Please note that not every submission can be included in the final survey. Some questions may be merged, combined, or slightly revised for clarity and length. We will do our best to ensure that all voices are represented.

The deadline to submit survey question ideas is Friday, September 12th at 9 p.m. EST.

Explore the latest research via our publication abstracts page

Did you know we post a selection of studies on spinal CSF leak each year? In 2025, we have already added more than 50 abstracts to the Publication Abstracts page on our website.

Many have used these papers and abstracts to advocate for their care, and we hope to keep arming patients with even more knowledge as the field continues to advance.

Sharing the latest research is at the heart of our mission, and new studies continue to emerge each year. Keep checking back as we bring you the most up-to-date work in the field. These studies provide knowledge, progress, and hope for our community.