May News from the Spinal CSF Leak Foundation

duradash® 2026 officially started on Sunday!

From May 24 through June 7, our community is coming together for two weeks of movement, awareness, connection, and collective impact in support of those affected by spinal CSF leak and/or intracranial hypotension.

Participation is flexible and designed to meet people where they are. You can:
• Register and fundraise
• Create or join a team
• Donate to a participant
• Make a donation directly to the Foundation
• Or support the campaign in any combination of the above

Every form of participation matters! It is not too late to sign-up!

Spinal CSF leak impacts far more than the individual living with the condition. Families, caregivers, friends, coworkers, healthcare providers, and entire support systems are often deeply affected by the challenges that come with a debilitating and underdiagnosed neurologic condition that too often goes unrecognized for far too long.

duradash® is the Spinal CSF Leak Foundation’s annual virtual awareness and fundraising campaign. Together, we are raising funds to support research, education, advocacy, and the ileak registry℠.

You do not need to be a patient to participate. Whether you are a caregiver, loved one, healthcare professional, researcher, advocate, coworker, or someone who simply wants to help make a difference, we are grateful to have you as part of this community and this mission.

We cannot wait to see what we accomplish together over the next two weeks.

ileak registry℠ update: soft launch success

Design built with intention.

After a successful soft launch, we are preparing to share it publicly with the global spinal CSF leak community. While you wait to enroll, let’s talk about the branding concept and identity.

The visual brand of the ileak registry℠ was created by our Board President Jodi Ettenberg with our community in mind. Purple anchors the design, reflecting the color of the Spinal CSF Leak Foundation and spinal CSF leak awareness in the United States. A wave along the bottom represents the dynamic, pulsatile flow of cerebrospinal fluid within the body. Above it, a watercolor background draws from the accent colors used across our other programs, creating continuity across our work. The watercolor was chosen intentionally because CSF is predominantly water. The fluidity of her design reflects both movement and connection.

More details on how to join the registry soon!

May is Mental Health Awareness Month

Mental Health Awareness Month is an important reminder that the impact of spinal CSF leak and/or intracranial hypotension extends far beyond physical symptoms alone. For many patients, living with this condition can also bring significant emotional and mental health challenges.

Persistent pain, neurological symptoms, uncertainty, lengthy diagnostic journeys, medical trauma, isolation, and the disruption of everyday life can deeply affect emotional and mental well-being. Many patients face not only the physical, but also the stress of navigating a condition that is still not widely recognized or understood.

At the Spinal CSF Leak Foundation, we believe mental health support is an important part of care. Our website includes a variety of patient support resources designed to help individuals and families feel more informed, connected, and supported throughout their medical journey. These resources include educational materials, support communities, physician directory information, conference recordings, and a patient resource list with links to mental health organizations, treatment resources, crisis lines, and additional patient and caregiver emotional support services.

The patient resource list was updated and expanded this year. If you have not had a chance to explore it yet, we encourage you to take a look.

New merchandise in duradash® and leakweek shop

Our duradash® and leakweek popup shop has been refreshed with new 2026 designs and merchandise to help our community spread awareness during this year’s campaigns.

The shop includes a variety of items such as sweatshirts, cropped sweatshirts, t-shirts, mugs, stickers, magnets, and more, all featuring updated 2026 leakweek and duradash® branding. These items are designed to help spark conversations, increase visibility, and give patients, families, caregivers, and supporters a way to show support for the spinal CSF leak community throughout leakweek and duradash®.

We also want our community to know that the Spinal CSF Leak Foundation does not make a profit from merchandise sold through the Spreadshirt shop. Products are offered at cost to help keep items affordable while creating more visibility.

We look forward to seeing members of the community wearing and sharing the new designs this year.

New research: Diagnostic utility of CTM in patients with persistent PDPH

A new study looks at how often CT myelography (CTM) identifies a spinal CSF leak in people with persistent headache after a dural puncture (PDPH), and found that it does so in only a fraction of cases.

Schartz et. al reviewed the records of 118 patients referred for CTM to evaluate ongoing PDPH between September 2013 and August 2025. These were patients whose headaches had not improved with standard care, and most had already received at least one epidural blood patch before being referred for myelography. The researchers looked at patient demographics, how much time had passed between symptom onset and CTM, findings from brain MRI, findings from spine MRI (when available), and the type of procedure that had triggered the PDPH.

CTM identified a leak in only 5.9% of patients (7 of 118). In four of those seven, the scan showed fluid collecting outside the dura, consistent with an active CSF leak. In the other three, it showed arachnoid blebs at or near the site of the original dural puncture.

Of the patients with an available brain MRI, only 8.3% showed findings of intracranial hypotension before going on to CTM. Brain MRI findings were more often positive in patients whose CTM also turned out to be positive. When the researchers looked at all the variables together, a positive brain MRI was the factor independently linked to a higher likelihood of CTM also being positive.

The authors note that because CTM requires an additional dural puncture, which is itself a risk factor for new PDPH, this low diagnostic yield argues for using the procedure sparingly, particularly when brain MRI shows no signs of intracranial hypotension. They also highlight that spine MRI, which is noninvasive, identified findings in two of three patients where it was available alongside a positive CTM.

The authors acknowledge that more research is needed, ideally a prospective study with paired MRI and CTM in the same patients, to better understand when myelography is genuinely useful for people with this type of spinal CSF leak.

duradash®- build your team!

Participate your way! Register, donate, or create a team for duradash® 2026!

One of the most meaningful ways to participate in duradash® is by creating a team and bringing others into the movement for spinal CSF leak awareness, education, and research. Teams can be made up of family members, friends, coworkers, healthcare providers, community groups, or anyone who wants to help make a difference.

Creating a team is simple. During registration, select “team” instead of “individual” and invite others to join your fundraising and awareness efforts. Every participant helps move research, education, advocacy, and patient support forward for the spinal CSF leak community.

Study alert: PCCT associated with a significantly lower radiation dose compared to traditional CT

We are excited to continue sharing new spinal CSF leak research published throughout 2026. The growing body of work across the field reflects both the complexity of these conditions and the meaningful progress being made in advancing diagnosis, imaging, treatment, and patient care.

A recently published study in the American Journal of Neuroradiology examined the use of photon-counting CT myelography (PCCT), an emerging imaging technology that may help reduce radiation exposure for patients undergoing diagnostic evaluation for spinal CSF leak. Researchers found that PCCT was associated with approximately 65% lower radiation dose compared to traditional CT techniques, even while imaging a larger anatomical area and acquiring more images.

Advances in imaging technology remain an important area of research within the spinal CSF leak field, particularly for patients who may require multiple diagnostic studies over time. Studies like this continue to highlight efforts to improve both diagnostic capabilities and patient safety.

Over 50 light ups confirmed for leakweek 2026

There are 57 light ups confirmed in 33 states for leakweek 2026!

This is officially the largest number of confirmed leakweek light ups we have ever had! This year, landmarks and buildings across 33 states will light up in purple during leakweek, June 1 through 7, to help raise awareness for spinal CSF leak. Most light ups will take place on the evening of June 3rd, creating a powerful wave of visibility happening all across the United States.

And this year’s list includes even more major landmarks! The amount of outreach, advocacy, and community effort behind this is amazing, and we are so grateful to everyone who helped make it happen.

If you are able to get out to a light up location near you, we would love to see photos. If you share your photos on social media, please tag @spinalcsfleakusa on Instagram so we can reshare. For all other photos, please send them to [email protected]. Thank you for helping spread awareness even further throughout the week! We know many in this community are living with disabling symptoms, so please only do what feels manageable and safe for you.

Be sure to check out the list of light ups!

Make a donation to duradash® and support our mission

Did you know you do not have to register for duradash® to make an impact?

You can support the campaign simply by making a donation. Every gift matters, no matter the size, and every donation helps push us forward. There is real power in collective giving.

We are incredibly excited about this year’s campaign and cannot wait to see what we can accomplish together. Whether you give $10, $25, $50, $100, or simply help share the campaign with others, you are part of something bigger.

Be part of it. Make a gift.

Growing EDS awareness and understanding this May

May is Ehlers-Danlos Syndrome (EDS) Awareness Month, and we want to recognize and support everyone living with EDS and HDS, including many within the spinal CSF leak community.

Connective tissue plays an important role in supporting the dura, the membrane that surrounds and protects cerebrospinal fluid around the brain and spine. For some individuals with connective tissue disorders such as EDS, dural fragility may contribute to the development of a spinal CSF leak, and many patients find themselves navigating both conditions simultaneously.

For those living with EDS alongside a spinal CSF leak, the journey to diagnosis and care can be especially complex. Patients often face years of debilitating symptoms, difficulty finding knowledgeable providers, and the emotional toll of trying to explain invisible illnesses that are frequently misunderstood or minimized.

Throughout EDS Awareness Month, we stand with the many members of our community affected by these overlapping conditions. We remain committed to supporting research, education, and greater clinical awareness to help improve recognition, diagnosis, and care for patients living with spinal CSF leak and connective tissue disorders.