April News from the Spinal CSF Leak Foundation

ileak registry℠ update: IRB approval

We are proud to share that the ileak registry℠ has officially received Institutional Review Board (IRB) approval!

This is a major milestone for the registry and for the many people who have worked tirelessly to bring it to life.

IRB approval confirms that the registry meets rigorous ethical and research standards and that participant rights, privacy, and data protections are central to this work. 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, providing a secure framework for patient-entered, longitudinal data collection.

Join us as we celebrate the registry and the incredible people behind it today!

duradash® registration opens May 15th!

Get ready! duradash® 2026 is almost here, and we are building momentum for our biggest year yet.

Registration opens May 15th. We hope you get involved, build your team, invite family and friends, and raise money to support this important work. Our goal is simple: to engage more people and raise more funds than ever before!

There are exciting things ahead at the Foundation. We are actively exploring new ways to expand education for our community and drive greater awareness across healthcare systems and online spaces. From advancing research to launching new initiatives like our international patient registry, the ileak registry℠, we need your support to help drive this work forward.

Whether you register, start a team, invite others, or make a gift, every action moves us closer to answers. Start where you are. Help drive what comes next.

Mark your calendar for duradash® 2026, May 24 - June 7, and get ready to join us. It takes all of us to keep the Foundation’s mission advancing for everyone. Check out our website event’s page or social media on May 15th to register!

Bring visibility to your neighborhood this leakweek

This year, you can help raise awareness for Spinal CSF Leak Awareness Week, leakweek, June 1 to 7, 2026, by turning your home into a visible sign of support.

Across the country, landmarks and buildings will be lighting up in recognition of leakweek. You can also be part of this growing movement of awareness right from your own home. To spark conversations in your own neighborhood, you can:

• Download the yard sign and print locally or through an online printer

• Use purple LED bulbs for your porch or exterior fixtures

• Add purple string lights along your roofline, porch, or windows

• Place purple spotlights to highlight your home or yard

• Use pathway or solar lights to line walkways

• Add indoor purple lighting with LED rope or purple flameless candles in windows to create a visible glow outside

Awareness is not only built through large, visible moments. It grows through small, meaningful actions taken by individuals across communities. Each conversation started, each sign displayed, and each light turned on contributes to a broader understanding of this condition.

Small actions matter, and together, they create powerful change.

Awarded the Candid Platinum Seal, highest level of nonprofit transparency

We are proud to share that the Spinal CSF Leak Foundation has again been awarded the Platinum Seal of Transparency from Candid, the highest level of recognition for nonprofit transparency and accountability.

This designation reflects our ongoing commitment to openly sharing information about our mission, programs, financials, and impact. It ensures that our community, donors, and partners have access to the information they need to understand how their support is making a difference.

Earning the Platinum Seal demonstrates our dedication to operating with integrity and building trust through clear, accessible reporting. It also reflects our continued commitment to expanding education, advancing research, and increasing awareness for those affected by spinal CSF leak.

We are grateful for your support and for entrusting us with your donations. Your contributions make it possible to expand education, reach more individuals and healthcare providers, and continue sharing critical information with the community.

Light ups for leakweek 2026

Landmark light ups are a powerful show of support each year, with purple lights shining in cities across the country as landmarks both small and large help raise awareness for spinal CSF leak and honor the strength and resilience of our community.

Our heartfelt thanks to everyone who has contributed to this year’s efforts. The number of confirmed 2026 light ups has already more than doubled from last year, with participation from landmarks, hotels, airports, bridges, and more across 25 states. This means more awareness and more conversations.

We would love your help to keep this momentum going. Take a look at the list and consider reaching out to landmarks in your own community. If you live near a participating location and are able to attend or have a friend or family member who can, please share photos on social media and tag us as @spinalcsfleakusa on Instagram, or email them to [email protected].

New research: Diagnosis, imaging, and physiology across the high-low cerebrospinal fluid spectrum

New open access research from Dr. Andrew L. Callen and Dr. Kyle Jenkins, both from the University of Colorado Anschutz, emphasizes a nuanced, clinically-oriented approach to interpreting neuroimaging across CSF pressure disorders like Spontaneous Intracranial Hypotension (SIH), Rebound Intracranial Hypertension (RIH), and Idiopathic Intracranial Hypertension (IIH) in order to support individualized treatment decisions in clinical practice.

This narrative review affirms something that we hear often from our community – that patients’ symptoms, imaging, and experiences do not neatly fit within the boxes of “low” or “high” cerebrospinal fluid pressure. As understanding of CSF disorders evolves, existing assumptions are being challenged, and conditions like SIH and IIH are increasingly being viewed as interrelated. With this complexity in view, this paper encourages physicians to evaluate patients who have subtle or mixed imaging findings – or partial or temporary treatment responses – with nuance.

The authors write: “Together, these insights reinforce the notion that in SIH, imaging must be interpreted as a window into a patient's physiology in the context of their symptoms, rather than a direct marker of the presence or absence of a spinal CSF leak, or a proxy for symptom burden.”

Research like this both highlights how far our understanding of spinal CSF leak has come and underscores the need for further research to drive improvements in diagnosis and care.

Help us grow duradash® through business teams and donations

This year, we are expanding duradash® and inviting businesses and companies to be part of the campaign. Many organizations today are committed to giving back and supporting causes that matter to their employees, customers, and communities, and we need your help to make those connections.

duradash® is open to everyone. You do not have to be a patient to participate. You can be someone in the community who understands the impact this condition has on individuals and families, or someone who wants to learn more and help raise awareness through education and engagement.

If you know of a business, consider reaching out and asking them to donate to the campaign (no registration needed) or after you register, invite them to support your fundraising efforts with a donation to your page. Share the work of the Foundation, why this cause matters to you, and the progress being made in research, while also highlighting the continued need for improved access to care, earlier diagnosis, and effective treatment.

You can also connect us directly with the business by emailing [email protected]. We are happy to speak with businesses about becoming an official duradash® sponsor and partnering with us in a formal way.

In addition to sponsorship, companies can create their own duradash® teams, bringing employees together for a shared purpose. Participation can be part of workplace giving initiatives, and the optional duradash®150-minute activity challenge can also be incorporated into employee wellness initiatives during May or June.

You can start thinking now about businesses you may want to reach out to, and next month’s newsletter will include tips from a patient volunteer who has successfully secured donations from businesses this year.

Recognizing volunteers during Global Volunteer Month!

Global Volunteer Month is a time to recognize the important role volunteers play in our community and the support they provide to patients across healthcare settings.

This April, and every month throughout the year, we celebrate every person who helps support the work of the Spinal CSF Leak Foundation, including our 100% volunteer Board of Directors. Since the organization’s founding, they have given their time, skills, and lived experience in service to this community.

Volunteers contribute across all areas of our mission. They support awareness and education efforts through leakweek and duradash®, help build resource lists for patients and families, share posts, assist with our annual conference setup, and engage with the community through Inspire.

We are grateful for every contribution, whether it happens behind the scenes, online, or out in the community. We are sending our heartfelt gratitude and appreciation to each of you.