Special edition: Spinal CSF Leak Awareness Week, leakweek

Halfway through duradash® 2026: Help keep the momentum going

We are officially halfway through duradash® 2026, and we continue to be inspired by the incredible support from this community.

Right now, 26 amazing individuals have signed up for duradash® and are helping raise funds and awareness for spinal CSF leak and/or intracranial hypotension. Their efforts are helping support the Foundation’s work in research, education, advocacy, awareness, and the ileak registry℠.

You can support the campaign in two ways:

• Donate directly to one of our participants and help them reach their individual fundraising goal

• Donate to the overall duradash® campaign and help us move closer to our community-wide goal

To everyone who has registered, donated, fundraised, or shared the campaign so far, thank you. We are excited to see what we can accomplish together during the second half of duradash® 2026!

It is never too late to be a part of it! We would love to reach our goal of 30 individuals participating - register anytime!

Let us count the ways: How you can support leakweek this week!

Awareness starts one conversation at a time. During Spinal CSF Leak Awareness Week, also called leakweek, there are countless ways to help start those conversations.

Some community members will visit a landmark light up. Others will share educational posts, participate in duradash®, light up their homes in purple, or update their social media profiles. Many will simply talk to a friend, family member, coworker, or healthcare provider about spinal CSF leak.

You can also:

• Update your Facebook banner and profile photo (see below!)

• Support or share duradash®

• Visit a leakweek light up near you

• Light up your home in purple

• Order and wear leakweek merchandise

• Share your story online and with someone new

• Create awareness in your own way in your community

Most importantly, participate in whatever way works best and is meaningful for you. We know many members of this community are living with symptoms that affect every aspect of daily life. Whether your contribution is attending a light up, sharing a post lying flat, or simply helping one more person learn about spinal CSF leak, it matters.

And awareness does not stop when leakweek ends. It happens every day, through conversations, shared experiences, advocacy, education, and community. We are grateful to have you in this effort with us. It takes all of us, in both big and small ways, to continue building awareness and helping more people find answers.

Get ready! Download the leakweek Facebook banner

Spinal CSF Leak Awareness Week 2026, leakweek, officially begins tomorrow, June 1. We are excited to see our community once again come together to increase awareness about spinal CSF leak and/or intracranial hypotension around the world.

One simple way you can help spread awareness is by updating your Facebook banner during leakweek. Awareness starts one conversation at a time, and even small actions can help more people learn more about a condition impacting the lives of so many around the world.

We have created a leakweek 2026 Facebook banner for our community to download and use throughout the week.

Update your social media profile pictures: Lots of leakweek options!

Continue helping us fill social media with awareness during leakweek 2026 by updating your profile photo with one of our leakweek profile pictures.

It only takes a few seconds, but when hundreds of people participate, it helps create a visible show of support and awareness across social media.

Rare conditions are often less rare than we think, and visibility matters. Seeing profile photos throughout the week helps highlight the many individuals, families, and communities impacted by spinal CSF leak.

This year's profile photos were designed to be inclusive of the many people affected. There are options for those with lived experience, loved ones, caregivers, parents, and even profile photos specific to different leak types for those who would like to represent their own experience.

We encourage you to choose the profile photo that best reflects your connection to this community and ask others in your circle to do the same. Friends, family members, caregivers, loved ones, and healthcare providers can all help increase visibility by participating.

This is how conversations start and awareness builds.

Thank you for securing Spinal CSF Leak Awareness Week proclamations

We would like to extend a heartfelt thank you to everyone who helped secure proclamations from governors, mayors, city councils, county officials, and other elected leaders across the country for Spinal CSF Leak Awareness Week 2026.

Advocacy efforts like these often begin with one person reaching out, sharing their story, and asking their community leaders to learn more. We know many of you spent time researching contacts, submitting requests, answering questions, and following up with offices, and we are incredibly grateful for those efforts.

Not every proclamation request results in an official proclamation, but every request creates an opportunity for education and conversation.

Thank you to everyone who dedicated their time, energy, and voice. Each outreach effort helped introduce community leaders and their staff to spinal CSF leak.

Interested in securing a proclamation in your own city or state? Proclamation requests can be submitted throughout the year and are not limited to leakweek.

Two new organizations for Spinal CSF Leak Awareness Week!

One of the most meaningful parts of Spinal CSF Leak Awareness Week each year is seeing organizations, advocates, patients, caregivers, and healthcare professionals from around the world come together to increase awareness about spinal CSF leak.

This year, we are proud to once again partner with spinal CSF leak nonprofits across the globe for Spinal CSF Leak Awareness Week 2026, with two new organizations joining the effort this year. This year’s participating organizations are the Spinal CSF Leak Foundation in the USA, the CSF Leak Association in the UK, Asociación de Hipotensión Intracraneal y Fugas de Líquido Cefalorraquídeo (AHIFUGA) in Spain, Spinal CSF Leak Australia, and Spinal CSF Leak Canada.

Together with these organizations, we are helping expand awareness, education, advocacy, and patient support internationally while working toward the shared goal of improving recognition, diagnosis, treatment, and outcomes in our own countries for patients. We will be sharing collaborative slides during leakweek — stay tuned!

We are especially grateful to the volunteers, board members, advocates, and patients with lived experience within these organizations who continue adding their voices to this growing global effort. Their willingness to share their stories, educate others, and advocate for change is helping increase visibility and understanding of a condition that impacts so many people around the world.

Be sure to check out our social media channels, as well as the social media pages of our partner organizations, throughout the week to see awareness activities, educational outreach, patient stories, and light ups from around the world.

Spinal CSF Leak Awareness Week collaborative slides available in Spanish for the first time!

We are excited to share that for the first time, Spinal CSF Leak Awareness Week collaborative slides will be available in Spanish. The slides were crafted with all five organizations in English first, and then translated by Spain’s AHIFUGA so that they can be posted separately. We will be sharing the Spanish-language educational slides on our social media channels soon after the English versions are posted. Spinal CSF Leak Canada will also be posting the collaborative slides translated into French.

Our hope is that these resources will help make information more accessible to Spanish-speaking patients, families, caregivers, advocates, and healthcare professionals in our community to help them better understand spinal CSF leak and/or intracranial hypotension.

At the Spinal CSF Leak Foundation, we believe everyone deserves access to educational resources that can help them better understand this debilitating condition. We encourage you to share both the English and Spanish educational slides throughout leakweek and help us ensure that education and awareness reach as many people as possible.

Find a leakweek light up near you

Landmarks and buildings across the United States are preparing to light up purple to help raise awareness this week. We have 58 confirmed light ups across 33 states - the largest leakweek light up effort ever! We’ve shared the list of light ups by region above, but you can check out our leakweek 2026 landing page below for the listings by State.

Most light ups are happening this Wednesday, June 3rd, creating a powerful wave of awareness and visibility across the country, but there are other landmarks lighting up in purple on different days during leakweek.

If there is a light up near you and you feel up to attending, we would love for you to check it out and help us continue spreading awareness. Taking photos, posting on social media, and simply showing support helps create conversations around a condition that still goes unrecognized for far too many people.

If you share photos on social media, please tag @spinalcsfleakusa on Instagram so we can reshare them throughout the week! Photos can also be emailed to [email protected].

Will you be lighting up your home? We’d love to see a photo!

We recognize that not everyone living with spinal CSF leak can travel, even locally, to visit a leakweek landmark light up. That is one reason why lighting up homes has become such a meaningful part of leakweek.

Many members of our community choose to light up their homes in purple using porch lights, spotlights, string lights, windows, yard displays, or other creative ideas. It is a simple way to show support, increase visibility, and participate in awareness efforts from wherever you are.

If you plan to light up your home during leakweek, we would love to see it. Please send your photos to [email protected] or tag @spinalcsfleakusa on Instagram so we can celebrate your efforts throughout the week.

Seeing homes lit up across the country always brings a smile to our faces and helps create a sense of connection and community that is so important. When a condition takes such a significant toll on daily life, it can be easy to feel isolated. These shared moments of awareness remind us that we are part of a larger community working together toward the same goal.

Make a donation to duradash® and support our mission

Did you know you do not have to register for duradash® to make an impact?

You can support the campaign simply by making a donation. Every gift matters, no matter the size, and every donation helps push us forward. There is real power in collective giving. Every dollar raised, whether through fundraising or personal donations, helps support the work of the Spinal CSF Leak Foundation, including education, advocacy, patient support, sponsoring the annual Spinal CSF Leak: Bridging the Gap conference, research including our Barriers to Care survey that we recently submitted for publication, and our international patient registry, the ileak registry℠.

We are incredibly excited about this year’s campaign and cannot wait to see what we can accomplish together. Whether you give $10, $25, $50, $100, or simply help share the campaign with others, you are part of something bigger.

Be part of it. Make a gift.