Raise Awareness

Why is it important to raise awareness about spinal CSF leak?

Because spinal CSF leak is so under-recognized by physicians and by the general public, grassroots efforts to raise awareness can be incredibly helpful. When people share information about spinal CSF leak, it increases knowledge of the condition, creates connection, and raises awareness.

And with more awareness, spinal CSF leak can be recognized more readily and consistently; the people who suffer from it can be diagnosed more quickly and treated more effectively; and research funding becomes less challenging to secure.

All of this is crucial to improving outcomes for anyone living with spinal CSF leak.

How can I help raise awareness about spinal CSF leak?

There are several things you can do to raise awareness.

You can:

Talk about it

Share your story—whether through sharing about your experience on social media, contacting your local news or television station to tell your story, or sharing it with us as a patient storyteller.
If someone you know is/was affected, talk about spinal CSF leaks on your social channels or in your networks.
Post on social media using the hashtags #spinalCSFleak and #becauseyourduramaters.

SHARE OUR INFORMATION WITH OTHERS

Share our website to help others find our accurate information about spinal CSF leak
We have extensive libraries of videos of presentations from conferences and symposia, patient stories, Q&As with experts, downloadable documents, and our social media content from Facebook, Instagram, YouTube, X (Twitter) and Bluesky.

Shop

Our Spreadshirt Shop features awareness items (including shirts, mugs, buttons, totes, and more) that can be helpful to kickstart conversations about spinal CSF leak.
When you shop online with Giving Assistant and/or Goodshop, a small percentage of your purchase is donated to us.

Fundraise

Set up an awareness and fundraising event

Donate

Funds are needed in order to keep the Spinal CSF Leak Foundation sustainable and amplify efforts to raise awareness, fund research, and support the spinal CSF leak community with educational projects and events. No contribution is too small! Your donation to our 501(c)(3) health nonprofit will greatly help us to advance our mission to reduce the suffering of anyone affected by intracranial hypotension or spinal cerebrospinal fluid leak. Thank you!