March News from the Spinal CSF Leak Foundation

duradash® and leakweek are quickly approaching!

Mark your calendars for two important annual community events!

First up is duradash®, our annual two-week virtual awareness and fundraising challenge, taking place May 24 - June 7, 2026. Participants are encouraged to complete 150 minutes of activity over two weeks, in any way that works for them, while raising funds to support spinal CSF leak research, advocacy, and education. You don’t have to do the activity to take part in this virtual event. Participants can also register just to raise awareness and funds or donate to a participant’s page to support their efforts.

During that same time, Spinal CSF Leak Awareness Week (leakweek) will be taking place, June 1 - 7, 2026. This global awareness campaign focuses on education and community action, including local proclamations, landmark light ups, and collaboration with our sister organizations across the globe.

Anyone can participate in duradash® and leakweek including patients, caregivers, family members, friends, clinicians, or anyone who wants to support progress in the field. More details on how to register for duradash® will be shared soon. In the meantime, you can visit our 2026 leakweek page to view the growing list of confirmed light ups and access a proclamation template and sample emails to help.

Upright: A new app to support CSF leak recovery tracking

Many people living with spinal CSF leak track their symptoms, treatments, and how long they are able to remain upright as they move through recovery. A new tool designed specifically for the spinal CSF leak community may help make that process easier.

Developed by Dr. Andrew Callen, Upright is a new app designed to help patients organize and monitor key aspects of their recovery in one place. Dr. Callen is an Associate Professor of Neuroradiology and the Neurology Director of the CSF Leak Program at the University of Colorado.

“Many patients already track their symptoms, upright time, treatments, and medications in notebooks or spreadsheets. I built a simple app to help organize that information and generate a clear recovery timeline that can be shared with their doctors,” said Dr. Callen.

The app also includes the ability to generate a summary report that patients can bring to appointments or share with their care team. These reports can highlight symptom trends, treatments, medications, and flat test results in one place. Upright also features a resource section with information related to spinal CSF leak imaging and care.

Tools like Upright play an important role in supporting patient self-advocacy and helping individuals continue to be active members of their own healthcare team.

We are grateful for Dr. Callen’s continued work and research, as well as his support of the Spinal CSF Leak Foundation through his volunteer role on our Medical Advisory Board and as Course Director for Spinal CSF Leak: Bridging the Gap.

Currently, Upright is available for iPhone, with an Android version in development.

Help us light up for leakweek 2026

During Spinal CSF Leak Awareness Week, June 1 - 7, 2026, we are working to light up communities across the globe - in the United States we are lighting up purple!

Public landmark light ups are one of the most visible ways to raise awareness of spinal CSF leak, a condition that affects individuals in every state. When city halls, bridges, towers, and other public places glow purple, they spark conversations and help bring attention to this under-recognized condition.

We invite you to reach out to landmarks in your community and ask if they would consider lighting up purple one day during this week (or even the whole week). Before submitting a request, please review the list of confirmed light ups, as the location you have in mind may already be participating. If it is, consider contacting another landmark nearby.

More than 30 light ups are already confirmed across the United States, and we hope to add many more with the help of our community.

If you are one of our community members in the UK, Canada, or Australia: our fellow organizations in those countries (CSF Leak Association UK, Spinal CSF Leak Canada, and Spinal CSF Leak Australia) are coordinating light ups for this year’s awareness week.

Celebrating Women’s History Month

During Women’s History Month, we recognize the many ways women contribute to advancing research, advocacy, and patient care. It is also an important time to acknowledge the experiences of women living with spinal CSF leak.

This condition disproportionately affects women, and many patients spend years searching for answers. Symptoms are often dismissed or minimized, contributing to delays in diagnosis and treatment for a condition where earlier recognition may make a difference.

We are also taking time this month to celebrate the women playing important roles across the spinal CSF leak community. At the Spinal CSF Leak Foundation, lived experience helps guide our work. Women serve across our organization in leadership roles, on the Board of Directors, and on our Medical Advisory Board contributing expertise and strengthening clinical understanding among their peers.

Women’s History Month serves as a reminder that progress in health care depends on strengthening representation for all.

ileak registry℠ update: IRB submission

We are pleased to share an important milestone for the ileak registry℠, our international patient registry designed to advance research and improve understanding of spinal CSF leak.

The ileak registry℠ and our marketing materials have now been formally submitted for Institutional Review Board (IRB) review, an important step in ensuring that the study meets the highest standards for ethics, participant protections, and research oversight.

IRB approval confirms that the registry meets rigorous ethical and research standards and that study participant rights, privacy, and data protections are in place. The ileak registry℠ is sponsored and funded by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through its IAMRARE® platform, which provides a secure framework for patient-entered data collection.

Once IRB approval is granted, which we have been told may take 2 - 4 weeks, we will move into the soft launch phase, followed by the public launch of the registry.

Study alert: Relative cost-effectiveness of atraumatic needles for LPs

A new study from researchers in the UK is supporting the use of atraumatic needles for lumbar punctures (LPs).

For those unfamiliar, an atraumatic needle has a blunt, pencil point (cone shaped) tip that separates and dilates tissue rather than cutting through it like conventional “cutting” needles. Atraumatic needles are still not typically the default choice in many hospitals. Cost is often cited as the reason, as atraumatic needles are usually more expensive than conventional needles.

This new study challenges that narrative. Researchers set out to estimate both the occurrence and the cost of post dural puncture headache (PDPH) after diagnostic lumbar puncture. In a hypothetical group of 100 patients undergoing lumbar punctures with conventional needles, the study estimated that 31 would develop PDPH and 7 would require epidural blood patches. In comparison, among 100 patients undergoing lumbar punctures with atraumatic needles, an estimated 12 would develop PDPH and 3 would require epidural blood patches.

In other words, patients who received lumbar punctures with atraumatic needles were estimated to develop post dural puncture headaches at less than half the rate of those who received conventional needles.

The study also found that using atraumatic needles could actually reduce overall healthcare costs. When the costs associated with complications were included, the estimated savings of using atraumatic needles rather than conventional needles was £5,212 per 100 patients.

At the Foundation, we hear from patients every day whose lives have been changed by complications following a lumbar puncture. Seeing research like this is encouraging. We remain hopeful that when a lumbar puncture does need to be performed, atraumatic needles will increasingly be used as a matter of course.

Barriers to care: prior authorization and patient access

For many people living with spinal CSF leak, one of the biggest barriers to care is access. Patients often need specialized imaging, procedures, or treatment. But sometimes before tests or care can move forward, insurance companies require prior authorization.

Our community is not alone in facing these challenges. Across diseases and conditions, administrative barriers hinder access to medically necessary tests and care.

Insurance prior authorization requirements can delay or even deny tests, imaging, or treatments that physicians have determined are medically necessary. These delays can allow conditions to worsen and can take a toll on patients’ physical, mental, and financial health. In fact, a 2024 survey by the American Medical Association found that 93% of physicians believe that prior authorizations resulted in delayed care for their patients.

Efforts are underway nationally to address this barrier and improve timely access to care. You can take action and advocate for our community and others by learning more and signing on to support improvements to the prior authorization process.

New research on estimated socioeconomic impacts of SIH

Community members write us often, sharing how spinal CSF leak has profoundly affected their day-to-day lives. Many patients tell us that they are no longer able to work due to the severity of their symptoms, despite their desire to do so. This is a loss that often has a devastating impact on their finances, making accessing care all the more challenging.

This new research puts data behind those lived experiences. A new study by Omer et al. focused on measuring the socioeconomic impacts of SIH on patients, as well as the effects of surgical treatment. After symptom onset, 96% of the 210 patients included in the study were unable to work as they had before. Sixty-one percent of patients were unable to work at all due to their symptoms.

Three months after surgical closure of their spinal CSF leaks, 55% of patients had returned to work full-time, while 19% were working part-time. At the latest follow-up, the return to full-time work number had increased to 65%, with only 9% of patients still unable to work.

The study also quantified the financial cost of SIH. Per patient, there was €32,576 in direct and indirect costs, spanning across healthcare expenditure and lost wages and benefits. The annual economic cost of SIH to Germany, the country in which this study was conducted, was estimated to be €85.75 million.

We are thankful for studies that emphasize patient lived experiences using validated data. We look forward to sharing the outcomes of our “Barriers to Accessing Care” survey once the results have been fully analyzed.

National Doctors’ Day March 30th

On National Doctors’ Day, we recognize the physicians who care for patients living with spinal CSF leak. Diagnosing and treating this complex condition requires persistence, expertise, and a willingness to listen carefully to patients.

This is a rapidly evolving field, with new insights, treatment approaches, and diagnostic advances emerging every year. We are grateful to the physicians who continue to advance spinal CSF leak care, research, clinical understanding, and who share their expertise with patients and peers.

We want to especially thank the physicians who serve on our Medical Advisory Board and those who have over the years presented at the Spinal CSF Leak: Bridging the Gap conference, helping to expand knowledge and provide up-to-date research to the patient community. Happy National Doctors’ Day to each of you.