July News from the Spinal CSF Leak Foundation

EDS 2026 Global Learning Conference: Helping connect the stripes

This month, the Spinal CSF Leak Foundation was proud to participate in The Ehlers-Danlos Society's 2026 Global Learning Conference: Connecting the Stripes!

We were honored to be part of the Comorbidity Corner alongside so many outstanding nonprofit organizations and patient advocacy groups dedicated to supporting people living with complex conditions.

Our Executive Director, Olivia Chelko, and Board Member and Secretary Aubrey Bolan attended the conference on behalf of the Foundation. As someone with lived experience of both Ehlers-Danlos Syndrome (EDS) and spinal CSF leak, Aubrey brought an especially meaningful perspective and connected with attendees about the challenges shared by both communities.

Throughout the conference, they met attendees, answered questions, and shared educational information about spinal CSF leak and/or intracranial hypotension. One of the most rewarding parts of the conference was meeting individuals affected by spinal CSF leak. We were grateful for the opportunity to introduce many attendees to the Spinal CSF Leak Foundation and share more about our mission, patient education and support resources, advocacy initiatives, and research efforts, including the recently launched international patient registry.

The conference helped us connect with healthcare professionals, researchers, and caregivers to strengthen existing relationships and build new partnerships that support our community.

Thank you to everyone who stopped by our table and to those in our community who attended virtually. We appreciated every conversation and the opportunity to connect with so many members of the EDS community. Conferences like this remind us of the power of coming together to share knowledge and ideas to advance awareness and research.

July is Social Wellness Month: Recognizing the power of connection

July is Social Wellness Month, a reminder of the important role connection plays in our overall health and well-being.

For people living with spinal CSF leak, staying connected isn't always easy. Symptoms can make it difficult to work, travel, participate in social activities, or even sit upright for extended periods.

Support can take many forms. Even online support can make a meaningful difference in someone’s life. The Spinal CSF Leak Foundation is grateful to partner with Inspire to provide an online support community for people affected by spinal CSF leak.

This month, we also had the opportunity to connect in-person with Inspire staff members at the EDS Conference as well as representatives of other nonprofits using Inspire. By partnering with Inspire, we can offer a welcoming space where individuals can connect with others who understand the realities of living with this condition.

As we recognize Social Wellness Month, we want to express our sincere appreciation to everyone who participates in our online community. Every thoughtful response, shared experience, and word of encouragement helps create a place where people feel understood and supported.

You may never know the full impact your kindness has on someone facing the challenges and often debilitating symptoms of spinal CSF leak, but it matters deeply. Thank you for the time, compassion, and support you so generously share with others. We are grateful for each of you and for the community we've built together.

ileak registry℠: Why is it important now?

Why is ileak registry℠ important now? Because diagnostic delays remain common. Because treatment pathways are not yet fully standardized. Because too many patients are still told their symptoms are unexplained. And because meaningful progress requires data that reflects real-world experience over time, not just isolated clinical encounters.

By centering patient-entered data, ileak registry℠ aims to ensure that lived experience informs research priorities, clarifies disease patterns, and identifies gaps in care. Over time, we hope that this longitudinal data can help guide future studies, strengthen collaboration, and support earlier diagnosis and more informed treatment decisions.

Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through their IAMRARE® platform, ileak registry℠ provides a secure and standardized framework for individuals around the world to contribute information about symptoms, diagnostic journeys, treatment pathways, and quality of life — at their own pace.

This registry is not a short-term project. It reflects our long-term commitment and mission of improving understanding and outcomes for people affected by spinal CSF leak.

Participation is open globally to individuals with suspected or confirmed spinal CSF leak, as well as to their authorized representatives. If you are living with spinal CSF leak, your experience matters.

Study alert: Impact of symptom duration on brain imaging in SIH

A new study published in the American Journal of Neuroradiology by Cimflová et al., demonstrates that brain MRI findings in spontaneous intracranial hypotension (SIH) evolve over time, with important implications for diagnosis.

In this cross-sectional study of 220 patients with SIH, the authors examined how symptom duration at the time of the initial brain MRI influenced the Bern SIH score, a validated imaging measure used to support SIH diagnosis. They found that the relationship was nonlinear, MRI abnormalities became more pronounced during the first weeks after symptom onset, peaked in the early phase of the disease, and gradually diminished in patients presenting months or even years later.

Patients imaged within the first weeks of symptom onset were much more likely to have high Bern SIH scores and classic imaging findings and these abnormalities were less common in patients with prolonged symptom duration.

These findings reinforce that symptom duration and the timing of imaging matters. A low Bern SIH score in patients with longstanding symptoms should not be used to exclude the diagnosis. Brain MRI findings should always be interpreted alongside how long the patient has been symptomatic.

July is Bereaved Parents Awareness Month: Recognizing and honoring parents

July is Bereaved Parents Awareness Month, a time to recognize and honor parents who have experienced the profound loss of a child.

Within the spinal CSF leak community, we know there are parents carrying this unimaginable grief. While words can never fully express the depth of such a loss, we want you to know that you are in our thoughts. We remember the children who are deeply missed and honor the love, memories, and lasting impact they continue to have on their families.

We are also grateful for the family members, friends, and loved ones who continue to offer support to you through simple but meaningful acts of kindness, such as listening, remembering birthdays and anniversaries, and, especially, for creating space for grief.

We hope this month, and every month, you are surrounded by compassion and support.

New research: CVFs arising in the absence of nerve root sleeve diverticula

New research is helping expand our understanding of cerebrospinal fluid-venous fistulas (CVFs), an increasingly recognized cause of spontaneous intracranial hypotension (SIH).

In the American Journal of Neuroradiology article, “CSF-Venous Fistulas Arising in the Absence of Nerve Root Sleeve Diverticula: A Multi-Center Review,” Spinal CSF Leak Foundation Medical Advisory Board Member, Dr. Ajay Madhavan, and colleagues examined rare CVFs that occur without an associated meningeal diverticulum.

Most CVFs arise from meningeal diverticula located along the nerve root sleeves. For this reason, the presence of diverticula on spine MRI may help predict whether one or more fistulas will be identified during decubitus myelography.

However, rare CVFs have also been identified without an associated meningeal diverticulum. In this multi-center retrospective review, researchers examined two uncommon forms: a fistula arising from a nerve root sleeve that does not contain a diverticulum and one arising directly from the common thecal sac, separate from the nerve root sleeve complex.

The study describes the clinical and imaging features of these less common CVFs and considers how they may differ from the more typical fistulas associated with meningeal diverticula.