June News from the Spinal CSF Leak Foundation

Special research update: Patient-reported barriers to care in spinal CSF leak

For years, we have heard from patients about the many barriers they face when seeking care for spinal CSF leak. Delayed diagnoses, misdiagnoses, financial strain, fragmented care pathways, and the emotional toll of not feeling believed.

To help better document and quantify these experiences, the Spinal CSF Leak Foundation created a patient survey in collaboration with Medical Advisory Board Member, Dr. Andrew Callen, Associate Professor of Radiology and Neurology, and the University of Colorado Anschutz. The survey was designed not only to capture practical barriers to care, but also the mental health impact of navigating this condition, including whether patients felt believed by clinicians, caregivers, and loved ones.

We are thrilled to share that the resulting manuscript, “Patient-Reported Barriers to Care in Spinal Cerebrospinal Fluid Leak: A Cross-Sectional Survey,” has been accepted by the American Journal of Neuroradiology.

This paper is especially meaningful to us because it reflects the voices of this community. We are also proud that the study is led by a patient author, our Board President, Jodi Ettenberg, with additional patient co-authors Kyle Spawn, Aubrey Bolan, and Maisie Smith.

Support and donations helped fund this paper and support open access so that, once the final version is published, patients will be able to read, print, and share it more easily with loved ones, caregivers, and healthcare providers. The open access version will be available after final publication, which is expected in the coming months.

The results highlight just how long and difficult the diagnostic journey can be for people with spinal CSF leak. Across all leak types, patients surveyed saw an average of 6.5 clinicians before receiving a diagnosis, and 78% were initially misdiagnosed. These delays had real consequences: about two-thirds of patients reported employment disruption, and 74.2% reported financial worsening. It also captured the emotional toll of delayed care, including that 19.9% of patients reported self-harm ideation while waiting for care and 42% described their emotional state as poorly managed. Importantly, the data showed that caregiver belief was the strongest protective factor against self-harm ideation.

Thank you to everyone who completed the survey. Your experiences, your voices, and your support are helping build a clearer picture of why improved access is so needed.

ileak registry℠ enrollment open

The Spinal CSF Leak Foundation has officially launched the international patient registry, ileak registry℠, a milestone that has been years in the making and one of the most important initiatives in our organization’s history.

Spinal CSF leak remains underdiagnosed and many individuals experience misdiagnosis, delays in diagnosis, and/or have limited access to specialized care. The Foundation’s international, patient-driven research registry for individuals with suspected or confirmed spinal CSF leak is designed with those barriers to care in mind. Developed through years of extensive collaboration, careful survey design, and multiple rounds of testing, this registry reflects the collective effort of patients, researchers, clinicians, our registry team, Board of Directors, and dedicated supporters and donors who believed that patient-entered data is essential to moving the field forward.

Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through their IAMRARE® platform, ileak registry℠ is an international, patient-driven research registry that allows people with spinal CSF leak to share their experiences directly with researchers.

June is Migraine and Headache Awareness Month

For many people in our community, headache is not simply pain. It can mean losing the ability to sit upright, work, care for family, spend time with loved ones, or take part in everyday life. It can mean planning each day around how long your body will allow you to be upright or finding that the symptoms you experience are difficult for others to see or understand.

During Migraine and Headache Awareness Month, we want you to know that we see you.

There is more than one kind of headache, and not every headache follows the same pattern. For people with spinal CSF leak, headache may be positional, may change over time, or may not fit the description others expect. We see those who spend months or years searching for answers. We see those whose symptoms were dismissed, misunderstood, or attributed to something else. We see those still waiting for care, navigating treatment, recovering from procedures, or learning how to live with symptoms that have not been fully resolved.

This month, and every month, we remain committed to our mission. We also want to recognize the headache advocacy organizations across the United States and around the world that have included spinal CSF leak and the headache experience of our community in their efforts to raise awareness, advance research, and advocate for greater funding for research and care. We are grateful to have our community represented in this broader work.

duradash® 2026 success and leaderboard

This year’s duradash® brought together members of our community from across the United States and around the world in support of the Spinal CSF Leak Foundation’s mission.

Over the course of the campaign, 42 participants helped inspire 286 donors to give. Those donations came from 181 unique cities, representing 38 U.S. states and Washington, D.C., 3 Canadian provinces, and 5 countries.

Together, our community raised $31,585, surpassing both our original $20,000 goal and the increased stretch goal of $30,000 we set after reaching that first milestone!

These numbers represent much more than the success of a fundraising campaign. They reflect hundreds of individual decisions to register, donate, participate in 150 minutes of movement, share the campaign online, and encourage others to do the same.

We are especially grateful to our duradash® ambassadors who volunteered their time to help recruit participants and build momentum throughout the campaign. A special thank you to our top five fundraisers, whose efforts alone account for a big share of what we've raised together:

• Ellen S. - $10,437.50 raised

• Jodi Ettenberg - $3,052.50 raised

• Kyle Spawn - $2,194.65 raised

• Gwen Prowse - $2,082.50 raised

• Leah Leavitt (Reah Reavitt) - $1,774.75 raised

Funds raised help support the Foundation’s work in research, education, advocacy, awareness, patient support, and the international patient registry, ileak registry℠. This campaign showed what is possible when our community comes together around a shared goal.

New research: Persistent headache burden after surgical treatment of PDPH

In this month’s new research highlight, we are featuring a study from Austria, Switzerland, and Germany examining surgical outcomes for Postdural Puncture Headache (PDPH) and dural-puncture-related CSF leak. The findings may feel familiar to many in the patient community: complete symptom remission was rare, while persistent headache and psychological burden remained common.

The study, led by Kapan, Iten, Ulrich, and Donnerstag, surveyed 136 adults through international patient support groups between February and April 2025, all of whom had undergone prior surgical treatment. The cohort was 74.3% female, with a median age of 38. Most had experienced a CSF leak following a lumbar puncture (65.1%) or epidural anesthesia (30.6%), and three-quarters had undergone one surgical intervention.

Only 9.6% reported complete symptom remission. More commonly, patients described slight and fluctuating improvement (38.7%) or significant but incomplete improvement (27.1%). Some reported largely unchanged symptoms (10.4%), while a smaller group experienced worsening (5.1%). The study measured headache disability using the HIT-6 scale and assessed occupational and psychological impacts.

The authors note that patient-reported outcomes following surgical treatment have been largely absent from the literature, and this work begins to address that gap. They call for prospective studies with structured follow-up.

Also worth noting: two of the authors, Kapan and Iten, are spinal CSF leak patients themselves.

Save the date for Spinal CSF Leak: Bridging the Gap 2026

Planning is underway for the Fourth Annual Spinal CSF Leak: Bridging the Gap, taking place November 14–15, 2026.

Presented by Dr. Andrew Callen and the University of Colorado Anschutz, this year’s conference will be offered as a hybrid event, with in-person attendance in Aurora, Colorado, and virtual participation available worldwide.

The Spinal CSF Leak Foundation is proud to sponsor this important educational event and grateful to continue working alongside Dr. Callen and the University of Colorado Anschutz for a fourth year to bring patients, caregivers, physicians, and researchers together.

For those who may be new to the conference, Spinal CSF Leak: Bridging the Gap creates a shared space for expert education, lived experience, and discussion of emerging advances in spinal CSF leak diagnosis, treatment, and care.

Additional details will be shared as they become available. As in previous years, admission will be free for patients. For those unable to attend, recorded sessions will be available on our website a few months after the event.

Genetic research: A rare variant exome sequencing study

Many members of the spinal CSF leak community live with heritable disorders of connective tissue, and researchers continue to study how connective tissue may contribute to Spontaneous Intracranial Hypotension (SIH).

A recent study by Parks et al., published in The Lancet Neurology, explored this connection in patients with lateral dural tears, a type of spontaneous spinal CSF leak. The research team, which included Medical Advisory Board Member Dr. Wouter Schievink, identified 42 patients with lateral dural tears and performed whole exome sequencing, a form of genetic testing.

Compared to adults without spinal CSF leak, these patients had a much higher rate of rare mutations in the FBN2 gene. This gene tells the body how to make fibrillin-2, a key building block of connective tissue. Mutations in a similar gene, FBN1 (Fibrillin 1), are associated with Marfan Syndrome, which is known to predispose patients to spontaneous forms of spinal CSF leak. Laboratory testing suggested that some of these FBN2 variants may weaken the structure of the dura, making it more susceptible to spontaneous tears.

While much remains unknown about how spontaneous spinal CSF leaks form, this study provides important evidence of a likely connection between connective tissue genetics and lateral dural tears. Research like this helps deepen our understanding of SIH, piece by piece, and brings patients closer to much-needed answers.

leakweek in purple - light up photos!

We know we have talked about leakweek landmark light ups quite a bit in recent newsletters, but it is only because we were so excited about our most successful leakweek light up yet.

Sixty landmarks across thirty-three states lit up purple for spinal CSF leak awareness. 

In this newsletter, we wanted to share some of the incredible photos, especially for those who do not follow us on social media. From big landmarks to small community spaces, buildings, bridges, fountains, and more turned purple to represent the patients and families affected by spinal CSF leak and help make this invisible condition more visible.

None of this would have been possible without the leakweek light up team, Leah Leavitt, Jodi Ettenberg, and Tara Speak, who coordinated these landmarks — as well as each and every one of you who went out and captured these moments in your local communities. We are grateful for all of your efforts so everyone could enjoy seeing just a few of the places, big and small, that turned purple during leakweek 2026!

Study alert: Elevated CSF beta trace protein levels with CSF-Venous Fistulas

Both patients and physicians know that confirming a spinal CSF leak diagnosis can be a challenge: brain imaging can be contradictory or normal and spinal CSF leaks can remain elusive even on specialized spinal imaging. For many, the diagnostic process is anything but straightforward, and there is a need for more diagnostic tests to be used in clinical practice.

We are thrilled to share some new research that represents exciting progress in this area.

Dr. Ian Mark and his team (including Medical Advisory Board Members Dr. Jeremy Cutsforth-Gregory and Dr. Ajay Madhavan) have previously investigated the use of Beta Trace Protein (BTP), a compound found in CSF, as a potential biomarker for diagnosing CSF-venous fistulas. This research investigated testing for BTP in patients’ blood, and found that there were consistently higher levels of BTP in the paraspinal veins near a CSF-venous fistula (CVF).

This new study by Dr. Mark and team, “Elevated CSF Beta Trace Protein Levels in Patients with CSF-Venous Fistulas,” builds on this previous work. Fascinatingly, the researchers found that patients with CVFs found on myelography had twice the levels of BTP in their CSF when compared to patients who did not have CVFs. Much is still unknown about CVFs, but thanks to recent research BTP is emerging as a potential blood and CSF biomarker.

We are heartened to see research such as this, which lays the groundwork for a greater breadth of diagnostic testing for spinal CSF leak patients.