February 2022 newsletter

February 1, 2022News

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Welcome to our February 2022 newsletter! To subscribe and have our monthly updates delivered to your inbox, please fill out the form at the bottom of this page.

Spinal CSF Leak in the news

CNN Travel recently published this piece by Jodi Ettenberg about her experience with spinal CSF leak:

Jodi, a former lawyer who became a food and travel writer, shared what it’s been like for her living with spinal CSF leak and how she has coped with the challenges it has brought. She currently focuses on writing about curiosity and resilience in the face of big life changes. Jodi is also a member of our Patient Advisory Panel for Research.

Symposium videos

Starting in January, we have been sharing videos from the Fourth Cedars-Sinai Intracranial Hypotension Symposium, hosted by Cedars-Sinai in partnership with the Spinal CSF Leak Foundation on Oct. 2, 2021.

So far, we have featured the following talks on our 2021 symposium page:

We’ll be featuring more in the coming weeks, so be sure to visit our 2021 symposium page or our symposium video library!

Later this month: Rare Disease Day

Since 2008, Rare Disease Day has raised awareness for those affected by rare diseases. One in 20 people will live with a rare disease at some point in their life—and yet there is no cure for the majority of rare diseases, and many go undiagnosed. Check out rarediseaseday.org to learn more about rare diseases and their impact on patients’ lives.

Also in February: Marfan Awareness Month

Marfan syndrome is one of several heritable disorders of connective tissue that can cause weakened spinal dura and spontaneous spinal CSF leaks. Approximately 200,000 people in the US have Marfan, but half don’t know it. Visit the Marfan Foundation website to learn the signs.

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