Our BTG 2025 patient compilation video, released early!

At last month’s Spinal CSF Leak: Bridging the Gap conference we shared a patient compilation video featuring members of our global community speaking openly about their lived experience with spinal CSF leak. While the remaining presentations from the conference are still being edited, we heard you loud and clear that you wanted to share this video with friends and family for the holiday season. We are making it available early so you can do so.

This time of year often brings moments of connection, which made it feel especially right to share the video now. These are the voices of our community, created entirely from messages submitted by individuals living with spinal CSF leak. The compilation reflects the strength and resilience that guide our mission and remind us why continued awareness, research, and education are so important.

Sharing something so personal with friends, family, loved ones, and caregivers can help open supportive conversations and offer a clearer picture of what this condition truly feels like. We hope this video offers you a sense of connection and encourages meaningful dialogue in your life.

Thank you to everyone who took the time to contribute a message. You have helped carry all voices forward in a powerful way.

Every website email query answered. Every time.

Did you know? Every message that comes through our website is read and answered by our volunteer board of directors, all of whom are patients with lived spinal CSF leak experience.

When someone reaches out with questions about leak centers, physicians in their state, region, or country, resource needs, or general questions about spinal CSF leak, a real person who understands what this journey feels like is on the other side offering support and information.

During the Foundation’s last fiscal year, which runs from July 1st to June 30th, we answered 181 patient queries through our website in addition to countless questions on our social media channels, forums, direct emails, and in our Inspire group.

Thank you for trusting us with your questions.

Year-end countdown! 16 days left to give

As we approach the final days of 2025, we are reminded of how much this community gives. Your stories, your compassion, and your willingness to share your experiences help others understand a condition that is still too often overlooked.

If you are able to support our work before December 31st, your year-end tax-deductible gift would mean so much. Only 16 days left to make a 2025 gift!

Whether it is a gift or a share, this work moves forward because our community believes in it. This year, we invite you to share the patient compilation video with your own circle to encourage others to make a year-end gift. If you would like to include a message when sharing, you are welcome to use or adapt this and use the video link above or share from our social channels (and if you are in the video let people know!):

“Many of you know my story, but I am sharing this video so you can also hear from other spinal CSF leak patients. These voices show what it is like to live with a leak, what we want others to understand, and the progress still needed in the field. If you are considering a year-end gift to a nonprofit, I hope you will consider supporting the Spinal CSF Leak Foundation. Make a donation at spinalcsfleak.org/donate“.

IH2025 conference videos and transcripts now available

We are happy to share that all conference video replays and transcripts from the Intracranial Hypotension Conference are now available on our website. The conference, held June 28 and 29, 2025, In Amsterdam. the Netherlands, brought together international experts to discuss the latest advances in the diagnosis and management of Spontaneous Intracranial Hypotension and related CSF leak disorders. The Spinal CSF Leak Foundation supported this event with an educational grant as part of our ongoing commitment to expanding awareness, education, and research.

We have been sharing highlighted sessions on our social channels this month and will continue to do so, but you can explore every session in full and transcripts by clicking the button below.

Our goal with every conference we support or host is to elevate education in both the patient and medical communities and foster continued collaboration. We hope these new resources serve as a helpful way to continue learning and moving progress forward.

Thank you for a meaningful GivingTuesday

Thanks to our community’s generosity, we are happy to share that we exceeded our GivingTuesday goal of $5,000 - raising $5,242 in support of our mission!

Every gift, whether large or small, played a part in helping us reach this goal and bring expert perspectives, trusted information, and patient centered programming to the spinal CSF leak community next year. Thank you to everyone who donated, shared our posts, and helped spread the GivingTuesday message.

Reminder: Barriers to Accessing Care survey closing soon

There is still time to share your lived experience with spinal CSF leak by participating in the barriers to accessing care survey. This survey was created by Dr. Andrew Callen at UCHealth University of Colorado Hospital to better understand delays in diagnosis, access to treatment, and receiving supportive care.

Your responses can help shine a light on how access could be improved. All responses are anonymous and may be used in academic work. If you have not yet taken the survey and have a suspected or confirmed spinal CSF leak, we hope you will complete the survey before it closes.

As a reminder, this survey is intended only for individuals with spinal CSF leak, not cranial CSF leak. If you have both types of leaks, please response only as it relates to path to care for your spinal CSF leak.

Holiday message from the Spinal CSF Leak Foundation

As the year comes to a close, we are holding this community close to our hearts. We are grateful for the spirit of community that carried the Foundation through this last year’s transition. We look forward to all that is possible together in 2026.

Your stories continue to guide us forward, and we carry them with us as we prepare for the year ahead. In 2026, we will be expanding education, stand committed to improving access to care, and support impactful research for all who are living with spinal CSF leak.

From all of us at the Spinal CSF Leak Foundation, we wish you moments of comfort and ease this Holiday Season.

Warmest regards,

The Spinal CSF Leak Foundation