Spinal CSF Leak Awareness Week: #leakweek 2025
This year’s awareness week, #leakweek2025, takes place June 1–7, 2025
Throughout this week-long international event, we’ll be sharing the latest information about spinal CSF leak in order to raise awareness and help more patients living the condition receive accurate and timely diagnosis and treatment. Once again, we are thrilled to team up with Spinal CSF Leak Canada and the UK’s CSF Leak Association to increase worldwide knowledge about this under-diagnosed and debilitating disorder.
See below for more about leakweek 2025!
Landmarks shining purple for Spinal CSF Leak Awareness in 2025
This year, we’re going back to our roots with landmark lightups! We haven’t done a light up campaign in recent years, but this year thus far we have a great list of iconic landmarks small and large who have agreed to participate in support of leakweek and shine brightly in purple, raising awareness and honoring the strength and resilience of the spinal CSF leak community.
We’d love you to write your local landmarks too! And if you live in an area where a landmark is lighting up and are mobile enough (or have a friend or family member who is willing to help), please send us your photos so that we can share them with the world. See below for more information on both ways our community can help with this program.
Our heartfelt thanks to the Foundation Board members and other volunteers who have worked to secure the early participation of the following landmarks for #leakweek2025:
- AES Indiana (Indianapolis, Indiana) — June 7
- Columbia Center (Seattle, Washington) – June 4
- Delaware State Capitol Building (Delaware – all week)
- James S McDonnell Planterium (St. Louis, Missouri) – June 4
- Jefferson Street Bridge (Ottumwa, Iowa) – June 4
- Martin Luther King, Jr. Bridge (Fort Wayne, Texas) – June 4
- Mayo Clinic (multiple locations) – June 7
- McNichols Civic Center Building (Denver, Colorado) – June 2 through June 7th
- Mid-Hudson Bridge Necklace Lights (NYC) – June 4
- Skydance Bridge (Oklahoma City) – June 4
Together, we are stronger and more capable of making a difference in educating the world about spinal CSF leak. 💜 Stay tuned for more landmark approvals as we receive them.
Template for writing landmarks to light up for leakweek
Do you have a local landmark you’d like to petition to light up for leakweek this year? We’re sharing a script that you can use to write local landmarks and ask them to support spinal CSF leak awareness for this year’s annual awareness event. If you receive a “yes” to your local landmark, please send us an email to staff@spinalcsfleak.org so that we can add your landmark to the list!
To whom it may concern,
I am reaching about “leakweek”, an annual awareness campaign for spinal cerebrospinal (CSF) leak, which is a debilitating and under-diagnosed condition [that I suffer from / that someone I love suffers from]. This annual campaign is run by the Spinal CSF Leak Foundation, a 501(c)(3) nonprofit health foundation focused on raising awareness, providing education, and funding research for the disorder. The mission at the Spinal CSF Leak Foundation is to reduce the suffering of anyone affected by spinal CSF leak and help patients obtain the correct diagnosis and access to the right testing and treatments, so that more patients will have an improved quality of life.
This year’s Spinal CSF Leak Awareness Week is June 1-7, 2025, and we are asking landmarks to light up purple to help “shine a light” on spinal CSF leaks.
Date requested: While any day during “leakweek” would be appreciated, our “light up” day this year is Wednesday June 4, 2025.
Name of associated event or organization: Spinal CSF Leak Awareness Week
Display request: All purple. Anything resembling Hex #5f2974 https://encycolorpedia.com/5f2974
As a local resident of [City], [Name of landmark]’s participation would not only demonstrate solidarity with those affected by spinal CSF leaks, but also help spark conversations and educate the wider community about this under-recognized condition. For more information about the condition, please visit https://spinalcsfleak.org.
If this request needs to be forwarded to a different department, I’d greatly appreciate your help in doing so. Thank you so much for considering our request and please let us know if you have any questions.
Kind regards,
[Your name]
Share your “light up for leakweek” photos with us!
Are any of the landmarks above lighting up for leakweek near you? If you or someone else you know is able to get a photo, please tag us on Instagram (@spinalcsfleakusa) or send us the image to staff@spinalcsfleak.org so that we can share it with the wider spinal CSF leak community!
We are excited to see so many landmarks helping support awareness for 2025.
City or State Proclamations
As part of Spinal CSF Leak Awareness Week (leakweek), some cities or states may offer proclamations in support of the event. Proclamations for an awareness week means receiving official, ceremonial documents from a government official (such as a mayor or governor) that recognize and highlight the importance of the awareness week, its cause, and the efforts to raise awareness about it.
Apply for a proclamation in your own city or state
If you’re interested in applying for a proclamation for your city or state, we’ve put together the following letter as a template to use when applying, to send with our sample proclamation.
[Date]
[Name/Title of local governmental official]
[Address]
Dear [Name]:
On behalf of people suffering from spinal CSF leak, I am writing to request that a proclamation be issued this year, June 1-7 2025, for SPINAL CSF LEAK AWARENESS WEEK. This week provides an excellent opportunity for [CITY / STATE / PROVINCE / COUNTRY] to demonstrate its support of local patients and families affected by spinal CSF leak.
Spinal CSF leak is a debilitating and under-diagnosed cause of new onset head pain. Cerebrospinal fluid (CSF) bathes and supports the brain and spinal cord, and is held in place by a layer of strong connective tissue called the dura mater. A spinal CSF leak happens when the spinal dura mater has a hole, tear, or other defect, allowing CSF to leak out of this enclosed space. This results in intracranial hypotension, a low volume of CSF remaining around the brain and spinal cord, leading to debilitating symptoms such as severe headaches, cognitive impairment, chronic pain, and sensory issues. SPINAL CSF LEAK AWARENESS WEEK (also called “leakweek”) is an annual event during the first week of June, this week during June 1-7, to help raise awareness for this debilitating condition. We use purple as our awareness color because it is commonly associated with headache awareness, a hallmark symptom of spinal CSF leak.
Because spinal CSF leak is unfamiliar to many physicians, it is regularly misdiagnosed. Patients can suffer for months, years, or even decades with the wrong diagnosis and the wrong treatments. Many patients are functionally disabled, and quality of life scores among patients with spinal CSF leak were found in a study to be even lower than patients with AIDS or cancer. People in our area are struggling with this reality right now, many of whom suffer months or years without proper diagnosis and treatment.
As a local patient with a spinal CSF leak, I be honored if you would sponsor an official proclamation to recognize June 1-7 2025 as [CITY / STATE / PROVINCE / COUNTRY] SPINAL CSF LEAK AWARENESS WEEK. Your proclamation would lend official recognition to the important work of educating the public regarding the condition, as well as showing support to your constituents who suffer from it. Furthering awareness of this condition is necessary to ensure more timely diagnosis and treatment, and ultimately, reduce the suffering of patients affected by spinal CSF leak and intracranial hypotension.
I have enclosed a sample proclamation from the Spinal CSF Leak Foundation, a 501(c)(3) nonprofit health foundation, that may help your office compose the appropriate proclamation for [CITY/STATE/PROVINCE/COUNTRY].
If you or your staff have any questions regarding this request, the sample proclamation, or SPINAL CSF LEAK AWARENESS WEEK, please contact me at [email]. I will follow-up with your office on this request in the next few days.
Thank you for consideration of this special request.
Sincerely,
[Name]
Fundraise in support of spinal CSF leak research and education!
Interested in doing more to support progress in the field of spinal CSF Leak? Your tax-deductible donation to the Spinal CSF Leak Foundation supports our efforts to raise awareness, educate others, and fund research. This includes clinician education initiatives, our international patient registry built on the NORD IAMRARE® platform, which is in its final round of testing, and ensuring the sustainability of patient-centered programming like our Spinal CSF Leak: Bridging the Gap conference, as well as educational grants toward the annual Intracranial Hypotension conference and continued publication of conference talks on our YouTube channel to learn from and share.
Your funds will help patients achieve earlier diagnosis, better treatment, and improved outcomes for anyone affected by spinal CSF leak.
FUNDRAISE VIA duradash®:
This year’s duradash®, our annual virtual activity challenge, will run from May 25–June 7, 2025. As with each year’s annual duradash® event, we are aiming to raise awareness and funds in support of spinal CSF leak research and education, so that more patients living with this under-diagnosed and disabling neurologic disorder are able to receive correct and timely diagnosis and treatment. On May 18th, check back here or on the the duradash® page for a link so you can sign up for this year’s campaign where you can create a personal fundraising page to share your story, hopes and dreams for spinal CSF leak research and education, and your personal challenges with the condition.
This year, we’re using a new platform that enables better tracking of your fundraising efforts and more fun customization of your own pages where you can tell your story. We’re excited to open registration for duradash® soon – keep your eye out for more details on May 18th!
OTHER WAYS TO DONATE:
By Mail: If you prefer to mail your donation check, please make the check payable to “Spinal CSF Leak Foundation.” Remember to include your full name and address so that we can mail you a receipt for income tax purposes. Mail it to us at Spinal CSF Leak Foundation, 100 N Howard St, Suite 5792, Spokane, WA 99201.
Legacy Gifts: You can remember the Spinal CSF Leak Foundation in your estate plan. Speak to your lawyer about planned giving to the Foundation through your will, trust or life insurance. We encourage all planned giving donors to speak to their attorney and financial planners regarding legacy gifts to the Spinal CSF Leak Foundation.
Employer Matching: Does your employer match charitable donations? Many companies will match donations to charitable organizations, increasing the impact of your personal contribution. If you need more information to work with your human resources department, please contact us at staff@spinalcsfleak.org
Charitable IRAs: Are you 70 ½ years of age or older and considering donating from a Charitable IRA rollover? Speak to your investment advisor about donating to the Spinal CSF Leak Foundation from your IRA. Please contact us at staff@spinalcsfleak.org if you need additional information.
Donor-Advised Funds: Donor Advised Funds are charitable investment accounts managed by investors that provide tax benefits while also making a significant impact on the mission of any qualifying charity — like the Spinal CSF Leak Foundation! To learn more about Donor-Advised Funds, speak to your investment advisor. Please contact us at staff@spinalcsfleak.org if you need any additional information.
Downloads for leakweek and spinal csf leak awareness
Here is some information that you can download and share as you raise awareness during leakweek.
2025 leakweek Fact Sheet (PDF)
A 1 page primer about leakweek.
About the Spinal CSF Leak Foundation (PDF)
Our history and mission.
Trifold Brochure (PDF)
A Patient’s Guide to Spinal CSF Leaks