Transcript
For those of you that don’t know me, I’m a physician, now retired from clinical practice, who has some experience from the other side of the bed rail as a patient with SIH. I was invited to share a few comments about the history of the Foundation as we mark 10 years since incorporation. In just a few minutes, I will try to cover a few highlights.
The landscape for spinal CSF leak patients was quite different 15 years ago. There were a limited number of publications on the topic and very few clinicians with an interest in caring for patients. Awareness among physicians was very low, and delayed diagnoses or misdiagnoses were the rule rather than the exception. Years or even decades of moderate to profound suffering and disability were common. Information for patients was sparse and often inaccurate.
Seeking to start closing some gaps, Eric Herzog and I set up a website to provide support and reliable information. After a couple of years, we decided to set up a nonprofit to amplify efforts beyond basic information and support. Once our nonprofit status was approved in late 2014, our first board of directors and our first medical advisory board were appointed in early 2015.
This is our current mission statement: to reduce the suffering of persons affected by intracranial hypotension or spinal CSF leak. Our strategic plan preamble summarizes the gaps we wish to close, such that patients would experience shorter diagnostic delays, receive more timely and appropriate diagnostic testing and treatments, and have better long-term outcomes.
Our main program categories are outlined here, and I will touch on just a few highlights from these areas. Early efforts focused on awareness and education targeted to both laypersons and medical professionals as a necessary foundation to then also support research. As we work to curate static and dynamic content via website and social media, we understood the power of patient stories. No data without a story, no story without data. In our first year, we produced the first patient stories in video format with plans to grow a diverse library. These shared stories provide a window into the varied experiences but also an opportunity to include teaching points, often with imaging.
Our branding is regarded as an important part of elevating awareness. Apart from the color purple used, our registered tagline, “because your dura maters,” draws attention to the anatomy involved. Shout out to my husband, Luke, for the tagline idea. The lowercase text reflects that patients are often vertically challenged.
The first annual leak week for spinal CSF leak awareness came together in 2017 – again all lowercase. A broad variety of content has been used each year to engage our audience. In 2019, we held our first dura dash, an activity challenge associated with leak week. Dura Dash was another idea from Luke that was registered along with CURE-A-DURA. This is me with my physical therapy assistant after running a 10K in a HydroWorx pool, which has an underwater treadmill and resistance jets.
We’ve used feature articles or reports to promote awareness. A feature on spinal CSF leak as an underrecognized cause of headache was published in Headwise magazine, an American Headache Society publication directed to a layperson audience. NORD, the National Organization for Rare Disorders, has a frequently referenced rare disease database. A report on SIH was first published in 2017, then updated in 2020, and again this year. This overview is suitable for newly diagnosed patients and for clinicians unfamiliar with the disorder.
There have been five symposia bringing together clinicians, researchers, patients, and caregivers, co-directed by Dr. Wouter Schievink. Fostering collaboration was – and is – a priority. The first symposium was funded in part by an NIH conference grant, which led NINDS to formally recognize SIH as an important cause of headache. Sessions were converted to on-demand videos to extend the reach to those unable to attend.
In 2018, Dr. Linda Gray solicited my help to organize the first low-pressure headache pre-conference at the Scottsdale Headache Symposium. The Foundation has also provided educational grants for other conferences, such as those hosted by Duke in 2019 and 2020, as well as the 2023 conference in Naples, Italy. Since 2017, it’s been fabulous to see an explosion of conferences all over the world as clinical interest has burgeoned.
We also gathered a team of key opinion leaders to work on specific diagnostic ICD-10 codes. Prior to this effort, there was a single non-specific code for CSF leaks, which had historically been used primarily for cranial leaks. Having specific diagnostic codes is incredibly important – not only for diagnostic accuracy in medical records but for insurance reimbursement, diagnostic testing, procedures, disability determinations, to help track prevalence, and other research.
Eleven new codes were implemented in 2020 that are listed here with previously existing codes that, obviously, we won’t go through today. These are the most frequently used codes now. In most cases, both a specific spinal CSF leak code should be used with a corresponding intracranial hypotension code. Headache with orthostatic component not elsewhere classified can be useful in cases where the correct diagnosis is not yet clear.
A few other research initiatives where my time is now focused are listed here. Early on, a panel of all involved subspecialties was gathered to review the literature, to formulate position statements, and to identify the top research priorities. This is ongoing. Our first research grants were awarded in 2018, and a patient advisory panel for research was selected and trained to provide formal input on research initiatives. Research priorities that are informed by the lived experience of patients translate to more patient-oriented evidence that matters.
While the pace of publications has accelerated, collaboration across specialties and institutions has greater importance to power research with larger cohorts. There’s work underway to develop the infrastructure for an international research network, and our international patient registry should launch next year. This registry will be hosted on NORD’s IAMRARE® platform and governed by an advisory board with patient, physician, and researcher participation. This will include patient-entered data, augmented with medical records and physician-entered data for some projects. This registry is designed for pooling larger patient numbers. Reducing barriers to participation by patients and researchers has the potential to address many of the remaining knowledge gaps, so stay tuned for more details closer to launch.
So that is a whirlwind tour of the early years of effort by a small but mighty team of patients and physicians seeking to make a difference, doing so much of that work on a volunteer basis. Huge thanks to each medical advisor, to each board member, to each volunteer, and to each donor for their contributions to date.
Hi, everyone. I’m Andi Buchanan, and I’ve had the pleasure of being the Spinal CSF Leak Foundation’s executive director since 2021. I first began volunteering with the organization in 2018, just around the time my memoir about my experience with the spinal CSF leak was published. My work began as a volunteer with the patient storytelling team and deepened and evolved as I joined the board of directors in 2019. In February of 2021, I was hired as the Foundation’s very first executive director.
The past three and a half years have been an incredible time of growth and expansion – not just in research on spinal CSF leak but for the Foundation as well. During my time as executive director, we were able to redesign our website to make information more accessible for patients, create a patient advisory panel for research to formalize the incredibly vital role of patients in moving research forward. We were one of 20 rare disease organizations awarded a one-time operating grant from the Silicon Valley Community Foundation via the Chan Zuckerberg Institute.
We created new storytelling features, including spotlights foregrounding the patient experience, empowering people to raise awareness through the power of their stories. We created videos, both emotionally powerful – like The View from Here – and informative, featuring interviews with physicians doing cutting-edge research. We strengthened and expanded our annual Awareness Week, leak week, partnering with other international organizations and communities to make spinal CSF leak awareness a worldwide phenomenon. And we worked on making our annual virtual activity challenge, dua dash, accessible to everyone who wanted to participate. We nurtured our growing support community on Inspire, created a podcast to talk about the emotional experience of living with spinal CSF leak, and launched the directory of physicians to help people locate doctors in their area who have experience in the field.
We continued to fund groundbreaking research through generous donations from our passionate community, including important work on disability in spinal CSF leak and multi-institution collaborative reviews – like this one on the role of epidural blood patching in spinal CSF leaks. And we continued our support of physician education with exhibitions, grants, and support for conferences around the world. We grew our board of directors and our medical advisory board. We created an advocacy team that inspired the launch of a clinician education initiative, inviting applicants to dream big and help increase the number of clinicians who are trained to recognize, diagnose, and successfully treat spinal CSF leak across the globe.
We laid the groundwork for a patient registry, which we hope to launch in the near future, and probably the closest to my heart – we established this incredible conference, forged in partnership with Dr. Andrew Callen. Being able to showcase the experiences of patients and have patients be heard in the context of an academic conference like this was so profound for patients and physicians alike. And being invited to publish a white paper on our very first conference last year by the American Journal of Neuroradiology was truly a standout accomplishment. Not only did the authors of this paper include doctors and researchers, but also patients, making it the first of its kind in the spinal CSF leak literature.
I’m so pleased to see this conference continue and to see our community of patients and physicians continue to learn from one another. As some of you know, I suffered a health setback earlier this year – not a leak, but something else that necessitated my taking medical leave. It’s why I’m not here in person today, and unfortunately, it’s why my time at the Foundation is drawing to a close. I am incredibly proud of the work we’ve accomplished over the past six years I’ve been with the Foundation – three and a half of those as executive director. I’ve been honored to be entrusted as a guardian of your stories, your milestones – both bittersweet and triumphant – your heartbreak and your hope. I’ve been elated to see the progress being made in terms of research and physician education and to know that our work has made a difference in pushing these things forward.
I’m so grateful to our wonderful board of directors, our dedicated medical advisers, our passionate volunteers, and generous donors. But most of all, I’m grateful for, thankful for, and proud of you – our spinal CSF leak community. It takes a lot of fight to turn pain into progress, into justice. It also takes a lot of vulnerability, a lot of strength, and a lot of hope. It’s been an honor to be a part of this community, and I’m so excited to see what the future holds for the Spinal CSF Leak Foundation, for spinal CSF leak research, for meaningful changes in the patient experience, and for all of us working to make a difference.
First, I would like to express my sincere gratitude to Dr. Connie Deline for sharing her valuable insights about the Foundation’s history and for highlighting that there was a critical need for an organized effort to support our community. We are deeply appreciative of her visionary leadership in co-founding this organization that has been a lifeline for so many. Though Dr. Deline stepped down from our board of directors and involvement in day-to-day operations in 2020, we’re so grateful for her continued commitment to our mission as a member of the medical advisory board and her invaluable contributions to the international patient registry project.
Next, I’d like to extend my heartfelt thanks to Andrea J. Buchanan – or as we know her, Andi – not only for her dedication as a volunteer and the heightened awareness brought forth by her compelling memoir, but also for her pivotal role as the Foundation’s first executive director. Her leadership has been instrumental in guiding the organization to its current stature, and her passion and hard work have resulted in numerous impactful programs for the patient community and beyond.
I hope everyone listening today found it as inspiring as I did to hear Connie and Andi reflect on the efforts in building the Foundation and expanding its awareness and advocacy into what it’s become today as we celebrate our 10-year anniversary. I began my journey as a volunteer in early ’21, possibly one of Andi’s first official recruits after she became executive director, when we looked back at the dates. My contributions were primarily behind the scenes, and then with the initial group of the patient advisory panel for research, and later joining the board of directors in the summer of ’22. It’s been an honor to serve as acting executive director, albeit temporary and in a part-time capacity, as we navigate this time of transition.
Despite the challenge of transition times as an organization, we remain deeply encouraged by the growth and accomplishments we’ve achieved, as well as the exciting projects on the horizon. At the Foundation, our steadfast priority is to expand awareness and support research, particularly through significant projects like the patient registry and this Bridging the Gap Conference, as well as supporting the patient community and helping through this often-isolating experience of having a spinal CSF leak. We are committed to driving priorities that align directly with our mission to reduce the suffering of individuals affected by intracranial hypotension or spinal CSF leaks. Our goal is for each person impacted by a spinal CSF leak to receive prompt diagnosis, access to appropriate testing and treatments, and ultimately an improved quality of life. We understand the toll, emotionally and physically, that this takes on patients, and like everyone here today, we hope for continued progress in the field.
I would like to give a sincere thanks to everyone who contributes to our mission. To our board of directors, some of whom are here today in person. Thank you for purposing your lived experience of spinal CSF leak into thoughtful leadership, and especially to our current president, Jodi Ettenberg, whose spinal CSF leak prevents her from being here today in person. She has selflessly answered the call to serve, and her efforts are matched only by her desire to help our community. To our dedicated volunteers supporting various events and programming – your efforts are appreciated and truly make a difference. Thank you to our Medical Advisory Board members, many are here today, for providing essential guidance and support, donating your time on a volunteer basis as well, particularly for large-scale projects. We also extend our appreciation to the broader community of treating physicians – your willingness to engage and uplift a community in need. Thank you to our donors, both large and small. Your ongoing generosity is vital to what we do, especially to the success of events like today. And, of course, a special thank you to patients, caregivers, and supporters – your encouragement, determination, and fundraising are what drives our mission forward.
To that end, 100% of our funding is derived from direct donations and occasional grants. We allocate these funds to initiatives that support our mission, including contributions to this conference and other educational events mentioned in this presentation. We are deeply grateful for the enthusiastic support of our community, which enables us to serve you to the best of our ability and strive for a future of improved quality of life for all. If you are able, we encourage you to consider making a donation to support our mission. Thank you.