News & updates from the Spinal CSF Leak Foundation

🌉 Thank you for attending Spinal CSF Leak: Bridging the Gap 2024!

Thank you to everyone who attended, spoke at, and supported the 2nd annual Spinal CSF Leak: Bridging the Gap Conference in early November. We had a fantastic line up of in-person and virtual speakers from patients and medical professionals alike. This year’s two-day event drew over 830 registered attendees from 32 countries.

The photos above feature the welcome sign for the conference, the beautiful venue at the University of Colorado Anschutz Medical Campus Health Sciences Building, cots for leak patients who might have needed them, our table for check in, and conference course director Dr. Andrew Callen kicking off the event on Day 1.

From Dr. Callen’s opening remarks:

We hope that this conference created a space for increased understanding and learning between patients and medical professionals, and we appreciate the enthusiasm and participation from attendees throughout the weekend.

As with last year, we recorded the physician and patient talks from the recent conference. Once we have edited the raw video files, we will be posting each talk to our YouTube channel. We will also be embedding them with the video transcripts on our website.

Thank you for helping make Spinal CSF Leak: Bridging the Gap a success! We hope it was an enriching and informative weekend for all.

📌 The search for an Executive Director

We shared in our last newsletter that our full-time Executive Director, Andrea J. Buchanan, stepped down from her role after a medical leave of absence and that former Board President Jen MacKenzie stepped into the Acting Executive Director role on a part-time basis since Andrea took leave.

During this time of transition our Acting Executive Director and a small team of Board volunteers — many of who face significant health challenges of their own — have worked hard to put on Bridging the Gap and keep the Foundation running as smoothly as possible.

The Spinal CSF Leak Foundation is a patient-led organization, with a mission to reduce the suffering of those with intracranial hypotension or spinal CSF leak. To support this mission long-term, we must find a permanent Executive Director. The hiring process — including searching, interviewing, and onboarding — is lengthy and involved, and consequently our bandwidth in other areas such as programming is reduced.

We kindly ask for your patience and understanding during this time, and look forward to when we can restart important initiatives like our patient stories series in full.

We will be sharing the job posting for our Executive Director position in a future newsletter, and would be grateful for your help in spreading the word to those with executive level non-profit experience when we do.

💜 Be a GivingTuesday champion for the spinal CSF leak community

Tomorrow, December 3, is GivingTuesday, a day when millions of people around the world do good together. In 2023, people collectively donated $3.1 billion during the 24-hour period.

On this annual day of giving, we thank you for your past donations and ask you once again to support the Spinal CSF Leak Foundation. We are a lean nonprofit that relies almost 100% on philanthropy. Your generosity of any amount fuels our success. 

Thanks to financial gifts from patients, caregivers and clinicians, we have been able to fund pivotal research, move toward launch for what we hope is an invaluable patient registry, raise awareness for this debilitating condition, and strengthen advocacy with stakeholders. We have also provided education for patients and healthcare professionals alike.

Donations will expand these initiatives and help launch new ones. They are how we are able to provide registration for patients to attend our annual Bridging the Gap conference free of charge. They will help us hire the Executive Director we need, a key step toward positioning us to do more for the people who count on us. 

Your gifts make a direct and significant impact. For example, your donations funded Quality of Life in Patients with Confirmed or Suspected Spinal CSF Leaks, a study that shared invaluable data and insights on how spinal CSF leaks affect the lives of patients. Published in the journal Neurology, this research spearheaded by Medical Advisory Board member Dr. Deborah Friedman raised much-needed awareness, and was also cited in several talks at our recent Bridging the Gap conference.

It’s easy to give. Here’s how:

• Make a gift directly via our Donate page.

• Give via our Donate button on our Facebook page.

• Double the impact of your contribution via Matching Donations if your company matches charitable donations. 

Thank you in advance for your consideration. However you give, we are sincerely grateful for your continued support.

🦋 We are on Bluesky!

We recently joined Bluesky, an open network social app that has grown considerably in the last month. You can find us here.

To make it easier for our community to find users to follow, we created a “Starter Pack”, an option Bluesky built for all the users who fit into a specific category.

Our starter pack is an international list of physicians, nonprofits, journals, and associations related to spinal CSF leaks, and is here (or you can click the image above). We will continue adding to our Starter Pack as more users in the field join the network.

💜 Your donations make our work possible! 💜
To donate, visit spinalcsfleak.org/donate

Spinal CSF Leak Foundation is fully registered and compliant in all states requiring registration, plus the District of Columbia. For more information, please see our charitable solicitation registrations page.