About Us
About Us
Spinal CSF Leak Foundation was established as a 501(c)3 non-profit organization in 2014 by individuals affected with intracranial hypotension. We strive to close gaps, to raise awareness, to educate both medical professionals and laypersons, and to stimulate and fund research such that persons affected by intracranial hypotension / spinal CSF leak will experience shorter diagnostic delays, receive more timely and appropriate diagnostic testing and treatments, and have better long-term outcomes.
OUR MISSION
To reduce the suffering of persons affected by intracranial hypotension or spinal cerebrospinal fluid leak.
OUR VISION
For each person affected by intracranial hypotension or spinal cerebrospinal fluid leak to receive prompt diagnosis, access to appropriate testing and treatments, and a favorable outcome.
OUR VALUES
Compassion – Our compassion for affected individuals fuels our efforts.
Integrity – Everything we do is with the utmost integrity.
Inclusiveness – We honor and respect the diversity of our community.
Hopefulness – We maintain hope for a better future despite the challenges.
OUR GOALS
Elevate Awareness – We seek to raise the level of awareness of intracranial hypotension or spinal cerebrospinal fluid leak among laypersons and health professionals.
Educate – We support and provide professional education on all clinical aspects of intracranial hypotension or spinal cerebrospinal fluid leak.
Support – We provide each person affected by intracranial hypotension or spinal cerebrospinal fluid leak access to compassionate, high quality informational and emotional support.
Advocate – We contribute our voice in advocating for better access to care and better support systems.
Connect – We promote collaborations among all stakeholders to accelerate advances.
Research – We encourage and support research on the epidemiology, causes, diagnostic testing, treatments, complications, and outcomes of intracranial hypotension or spinal cerebrospinal fluid leak.
ABOUT OUR LOGO
The color purple was chosen by a group of people affected by spinal CSF leak to represent the cause. Purple has been used by a few neurologic disease health advocacy groups for headache awareness, as well as by the Marfan Foundation. (Marfan syndrome is one of the heritable disorders of connective tissue that predisposes to spinal CSF leaks). The color gray represents the dura and brain. The brain and spine icon recognizes the spine as the source of the problem and the effects on the brain from loss of CSF volume. The brush stroke of the brain and spine impart a sense of flow, reflecting the flow of cerebrospinal fluid. The use of “spinal csf leak” in lower case represents the poor tolerance of upright posture by affected individuals. The upper case block for “foundation” is intended to impart a sense of strength.
ABOUT OUR TAGLINE
Our tagline because your dura maters® is a registered service mark with the US Patent & Trademark Office. The spelling of this tagline is deliberate, as it is a play on the term “dura mater,” from the Latin meaning “tough mother.” The dura mater—sometimes abbreviated to simply “dura”—is the outermost layer of meninges or connective tissue layers that surround brain and spinal cord. A spinal CSF leak occurs when there is a defect, hole, or tear in the dura mater. Hence our tagline, which emphasizes that your “dura mater” matters.
OUR STATEMENT ON DIVERSITY, EQUITY, AND INCLUSION
Spinal CSF Leak Foundation Statement on Diversity, Equity, and Inclusion
