A transitional year, with real accomplishments

This past fiscal year was a transitional one for the Spinal CSF Leak Foundation, but one marked with progress and meaningful accomplishments made possible by your support. The impact of that work is already visible and shaping what comes next.

As you know, throughout the year, the Spinal CSF Leak Foundation advanced education for patients, caregivers, and clinicians through updated online resources, direct responses to patient inquiries, and global conference programming. Awareness efforts also grew through national campaigns such as leakweek and duradash®, including public education, peer-to-peer engagement, city proclamations, and 15 landmark light-ups across 15 states.

At the same time, work was completed that could change future research in the field through the continued progress on our international patient registry, the ileak registry℠. Throughout 2025, we refined survey content, strengthened the data dictionary, incorporated patient and clinician input, and conducted several testing rounds.

Each step forward reflects the collective effort and advocacy of patients, caregivers, volunteers, clinicians, donors, and community members.

Thank you for being a part of this work.

Our growing global digital community

In 2025, the Spinal CSF Leak Foundation’s global digital reach continued to grow, connecting more patients, caregivers, and clinicians worldwide. Across our online platforms, the Foundation now reaches 15,698 Inspire community members, more than 11,000 Facebook followers, 5,860 YouTube subscribers, over 2,500 Instagram followers, and more than 150,000 annual website page views.

These numbers represent more than reach. They represent individuals finding trusted, accessible resources to become the best advocates for themselves, increased access to health information, and patients engaging in more informed conversations with their healthcare providers and loved ones.

Looking ahead to 2026, we remain committed to building on this growth to strengthen connection, expand education, and support patient-driven advocacy in our community.

Year-end giving countdown! Three days left to give

Year-end gifts play a critical role in helping ensure that the projects developed throughout 2025 can move from development to implementation in the months ahead.

With just a few days left in the year, we invite you to support our work before December 31st. Your year-end, tax-deductible gift would mean a great deal.

There are only three days left to make a 2025 gift.

You can also support us by helping spread the word. Sharing why the Spinal CSF Leak Foundation matters to you, whether by reposting our message or sharing your own lived experience with the condition using our donation link (spinalcsfleak.org/donate), you help others understand the importance of this work during a time when many are considering year-end giving.

Advancing towards launch: Our international patient registry

This year marked major progress toward the launch of the Spinal CSF Leak Foundation’s international patient registry, the ileak registry℠, a patient-led initiative built around patient-entered data. This registry was designed with lived experience at its core, allowing individuals affected by spinal CSF leak to share data reflecting their realities of diagnosis, treatment, and care.

We are excited to report that this month the registry entered its final round of testing. With final testing underway, we are preparing for launch, offering all of us a powerful way to contribute to long-term understanding, research, and improved care.

Though it took time, repeated testing has been an important step in validating survey design, data structure, and usability, helping ensure our international patient registry produces high-quality data once it launches.

We know you join us in looking forward to the launch!

Looking ahead: New support resources coming soon

This year, with the help of volunteers, we worked to develop an expanded resource list focused on wraparound support. These resources were complied to help individuals navigate the practical challenges that often accompany spinal CSF leak, including financial assistance, insurance navigation, workplace support, transportation needs, meal support, mental health resources, peer support, and services for caregivers.

This work is now in its final stages, with finishing touches underway! We are excited to share this updated resources list in early 2026.

Built with care, collaboration, and community at the center, these new resources aim to help make it easier for individuals to get support in the way they need during an overwhelming, often long, and difficult health journey.

Entering the new year, together

As we move into the new year, we recognize that for many this journey continues to be challenging. Progress is rarely linear, and for patients and their loved ones, the path forward requires persistence and support.

The Spinal CSF Leak Foundation’s work shared throughout this newsletter reflects steady progress in the field. Each initiative is grounded in listening to patients and caregivers, and works to increase access to education, enhance awareness, and support research.

As we enter the new year together, we are holding space for all that this moment may bring. Please know your presence, engagement, and shared experiences continue to guide and strengthen this work.

The Spinal CSF Leak Foundation’s Board and staff wish you moments of relief and comfort in the year ahead.