Help to Raise Awareness about Spinal CSF Leaks
Spinal CSF leak remains under-recognized by physicians and by the general public. Grassroots efforts to raise awareness are critical to shifting this disorder to being recognized more consistently and more promptly.
Without the correct diagnosis, the correct treatments will not be applied, so suffering is prolonged.
Until more patients are diagnosed, research funding will remain more challenging to secure.
- Talk about spinal CSF leaks and how you or someone you know is/was affected.
- Consider sharing your story in a more formal way. (see below)
- Post on social media using the hashtags #spinalCSFleak #uprightheadache
- Share the link spinalcsfleak.org to help others find our information.
- Share our news content, videos, patient stories, downloadable documents and content from Facebook and Twitter.
Shop for Awareness Items
Awareness items are helpful to kickstart conversations about spinal CSF leaks.
Our CafePress store has a variety of awareness items.
Start all of your online shopping with AmazonSmile, and/or Giving Assistant and/or Goodshop (Gumdrop browser add-on makes it convenient). A small percentage of your purchase will be donated to us.
Share your Story
1) Share your story on social media (text or video) and/or on our facebook page
2) Let us share your story more formally. We will be featuring more patients stories in both text and video format. Email your story to us at firstname.lastname@example.org.
3) Contact your local newspaper or television outlet to tell your story.
4) Share your story with the Mighty:
Go to The Mighty’s story submission page.
Plan to include at least 1 photo in your submission, to appear with your story.
If you already have a Mighty account, fill out the form to submit a story. If you don’t have an account, set one up and then you can fill out the form and submit a story.
Make sure to click ‘Yes’ under ‘Did a Mighty Partner organization recommend you write this story?’ and select us from the Partner Association menu. That way you can be sure our resources will appear on your story.
Funds are needed to amplify efforts to raise awareness as well as for educational projects and to fund research.
No contribution is too small.