September News from the Spinal CSF Leak Foundation

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Registration is open for Spinal CSF Leak: Bridging the Gap 2026

Registration is officially open for the Fourth Annual Spinal CSF Leak: Bridging the Gap Conference, happening November 14–15, 2026.

Presented by Dr. Andrew Callen and the University of Colorado Anschutz and sponsored by the Spinal CSF Leak Foundation, this year’s conference will be held as a hybrid event, with in-person attendance in Aurora, Colorado, and virtual participation options.

This two-day conference will bring together physicians, researchers, patients, caregivers, and members of the broader spinal CSF leak community to share knowledge, explore cases, discuss emerging research and clinical advances, and continue building a more complete understanding of spinal CSF leak.

Whether you plan to join us in Colorado or participate from home, we hope you will be part of this year’s conversation.

As in past years, admission is free for patients and caregivers/family members. Registration options are also available for medical professionals, including in-person registration with CME, in-person registration without CME, and virtual attendance.

If you are attending in person, hotel rooms for the discounted rate have to be booked by October 19.

Find all the information you need to know, including the full agenda and hotel booking link, on the registration page. We hope you’ll join us as we come together once again as a community.

September is National Suicide Prevention Month

Living with a spinal CSF leak can affect far more than physical health. Severe symptoms, disability, isolation, difficulty accessing knowledgeable care, and a long or uncertain path to diagnosis and treatment can take a significant emotional toll.

Research has documented just how serious that toll can be. In a study funded by the Spinal CSF Leak Foundation and published in Neurology, 67 patients with confirmed or suspected spinal CSF leak completed the Columbia-Suicide Severity Rating Scale. Of those respondents, 64.2% endorsed a wish to be dead, and 22.4% had demonstrated suicidal behavior.

These numbers are difficult to read, but they are important to acknowledge. They reinforce why mental health and emotional well-being must be part of the conversation about spinal CSF leak, alongside diagnosis, treatment, research, and access to care.

During Suicide Prevention Month, we want to remind our U.S.-based community about a resource that is only three numbers away: the 988 Suicide & Crisis Lifeline is available 24 hours a day, 7 days a week. You can call or text 988 or connect through online chat. You do not have to be in immediate crisis to reach out.

If you are struggling, please tell someone. Reach out to a family member, friend, healthcare professional, or 988.

CU CSF Leak Program receives transformative $50 million gift

Congratulations to the University of Colorado Anschutz Medical Campus, Dr. Andrew Callen, and the entire CU CSF Leak Program team on an extraordinary $50 million gift from an anonymous donor to support and expand the program’s work.

This investment will help increase access to specialized care, grow the team dedicated to spinal CSF leak, reduce barriers for patients, and support continued research and innovation in diagnosis, treatment, and recovery. Its impact has the potential to extend well beyond CU, helping move the field forward and creating new opportunities to improve care for patients.

The CU Anschutz feature announcing the gift also shares the story of Spinal CSF Leak Foundation Board Member Jen MacKenzie, who tells her story of years of debilitating symptoms, misdiagnoses, and a search for answers before finding her way to Dr. Callen. The feature story follows her path from diagnosis through treatment, surgery, and recovery and offers a powerful example of why access to experienced spinal CSF leak care matters.

Dr. Callen serves on the Spinal CSF Leak Foundation Medical Advisory Board and is Course Director for the annual Spinal CSF Leak: Bridging the Gap conference held on the CU Anschutz campus. In the article, Dr. Callen describes one of the most important things he can offer a patient in three simple words: “I believe you.”

We are grateful to the anonymous donor for making such a significant investment in the future of spinal CSF leak care, and we encourage our community to read Jen’s story and learn more about the impactful gift in the full CU Anschutz feature.

September is Chiari Malformation Awareness Month

September is Chiari Malformation Awareness Month, an opportunity to increase understanding of Chiari malformation and the experiences of those living with this condition. For many people, understanding the cause of their symptoms can be a complicated journey.

Chiari malformation occurs when part of the cerebellum extends downward through the opening at the base of the skull. This can affect the normal flow of CSF and may be associated with symptoms such as headache, neck pain, dizziness, balance problems, visual changes, and other neurological symptoms.

But there is an important diagnostic consideration when evaluating someone for possible Chiari: not all cerebellar tonsillar descent represents primary Chiari malformation. Intracranial hypotension caused by a spinal CSF leak can also produce downward displacement of the brain, including the cerebellar tonsils. Symptoms associated with Chiari may overlap with those seen in other neurological and CSF disorders, including spinal CSF leak.

Careful evaluation of both the clinical picture and the imaging findings is therefore important to help identify the underlying cause and ensure appropriate treatment.

This month, while we raise awareness of Chiari malformation, we also want to recognize those whose symptoms or imaging findings may initially be attributed to Chiari but are ultimately found to be related to a spinal CSF leak. We also want to support everyone navigating a CSF disorder. Each person’s experience is different, and every patient deserves to be heard, understood, and supported.

Increasing awareness of neurological disorders means not only recognizing these conditions, but also understanding the important distinctions between them.

Terminology highlight: Lateral decubitus

We know so many members of our community have become experts in their own care, including understanding medical terminology, reading imaging reports, and navigating complex conversations with their healthcare teams.

We also know that many people are new to spinal CSF leak and are trying to learn an entirely new medical vocabulary while also coping with symptoms, appointments, testing, and uncertainty. That is why we are introducing a new newsletter section highlighting a medical term, abbreviation, or phrase you may encounter in spinal CSF leak care.

This month’s term: Lateral decubitus

Lateral decubitus simply means lying on your side. Right lateral decubitus means lying on your right side, while left lateral decubitus means lying on your left side. In spinal CSF leak evaluation, this positioning may be used during certain types of myelography to help physicians look for the source of a leak.

Whether a term is new to you or you just need a refresher, we hope this section makes the language of spinal CSF leak a little easier to navigate.

You can also find a full glossary of common terms and abbreviations on our website, available anytime you need it.

Study alert: Pediatric neuroradiologist guide to spinal CSF leaks

A recent open access review published in Pediatric Radiology offers an important overview of the diagnosis, imaging, and treatment of spinal CSF leak in children. The article was authored by Medical Advisory Board Member Dr. Mark Mamlouk and provides a practical discussion of the challenges clinicians may encounter when evaluating pediatric patients for a possible spinal CSF leak.

The review discusses the role of brain and spine MRI as part of the initial evaluation, as well as advanced imaging techniques that can help identify and localize different types of spinal CSF leak. One important consideration highlighted in the review is that, when clinical suspicion remains despite negative imaging, additional evaluation, including myelography or consideration of epidural patching, may be considered based on the individual patient and after weighing the potential benefits and risks.

The review also addresses treatment approaches specific to pediatric patients and describes advances in image-guided patching, endovascular treatment, and surgery.

Pediatric spinal CSF leak remains an area where more research is needed. Much of the current understanding of diagnosis and treatment comes from research in adults, while the field as a whole continues to evolve. Additional research focused specifically on children will be important to better understand how spinal CSF leak presents in pediatric patients.

Participate in ileak registry℠ using the IAMRARE® mobile app

Remember: you can participate in ileak registry℠ using the IAMRARE® mobile app! Log in from your phone, complete surveys while lying flat, start and stop anytime, and return at your own pace. Even a few minutes at a time helps strengthen the data and move research forward for our community.

The National Organization for Rare Disorders (NORD®)’s IAMRARE mobile app is available in the Apple App Store and Google Play. The app connects directly to ileak registry℠ using the same login you already created, and saves automatically as you fill out your information.

Funded and sponsored by the Spinal CSF Leak Foundation and built on NORD’s IAMRARE platform, ileak registry℠ captures patient-reported information about symptoms, diagnosis, treatment, and quality of life.

Each response, completed at your pace, in a position that helps you manage symptoms, strengthens knowledge for the entire community. Thank you for helping us move progress forward.

New research: Brain parenchyma deformation and strain in patients with SIH

New research published in Fluids and Barriers of the CNS provides new insight into how the brain may be affected by spontaneous intracranial hypotension (SIH) associated with spinal CSF leak.

Rahal et al. analyzed MRI scans from 96 patients with SIH before and after surgical closure of a spinal CSF leak and compared them with 61 healthy adults. Beyond the familiar description of “brain sagging,” the study identified measurable deformation and mechanical strain in several regions, including the temporal poles, hippocampus, and basal forebrain. These areas are involved in memory, cognition, emotion, and behavior.

The findings add to growing scientific evidence that the effects of SIH extend beyond orthostatic headache to involve broader neurological and cognitive symptoms. While the study does not establish that mechanical strain directly causes specific symptoms, it provides an important foundation for further research into how spinal CSF leaks may affect brain function and recovery.

Nonprofit Highlight: The Mast Cell Disease Society

We know many people in the spinal CSF leak community are also living with other co-occurring conditions. We also know how difficult it can be to find trusted information, support, and resources for everything you may be navigating. That is why we have a nonprofit highlight section in our newsletter. We know supporting you means helping you find the information and communities you may need along the way.

This month, we’re highlighting The Mast Cell Disease Society (TMS), a nonprofit organization dedicated to supporting people affected by mast cell diseases. Like the Spinal CSF Leak Foundation, TMS was founded by patients who saw a need for greater support, information, and connection within their community. TMS provides resources for patients, families, and healthcare professionals, including educational materials, patient guides, support groups, emergency room resources, information about treatment and research centers, webinars and courses, and opportunities to participate in research and clinical trials.

For those who don’t know, mast cells are immune cells found throughout the body. When activated, they release substances such as histamine, tryptase, prostaglandins, and leukotrienes. Those chemicals help with normal immune responses, but excessive or inappropriate release of these mediators can cause symptoms involving multiple body systems.

We know how valuable it can be to have access to reliable information and a community that understands. We hope these nonprofit highlights continue to help connect you with additional resources that may support you or someone you care about.