News

Join our Thunderclap!

Join our Thunderclap!

CLICK HERE to JOIN our THUNDERCLAP to help us launch #leakweek (Spinal CSF Leak Awareness Week) with the release of our new video animation called Upright Headache. As many of you know, a headache that is worse when upright can actually be from a spinal cerebrospinal...

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Expert Q & A series LIVE during #leakweek

Expert Q & A series LIVE during #leakweek

During #leakweek which is February 26 thru March 4, 2017, we hosted a series of 3 expert Question and Answer sessions LIVE on our Facebook page. We were grateful to these 3 experts who graciously agreed to participate. Replays are available HERE

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Rare Disease Database Report Published by NORD

Rare Disease Database Report Published by NORD

The National Organization of Rare Disorders (NORD) has a widely referenced library of more than 1,200 reports on rare disorders that provide important information written at a level suitable for patients and their families. NORD has recently released a new Rare...

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PA Senate Resolution Designates Spinal CSF Leak Awareness Week

PA Senate Resolution Designates Spinal CSF Leak Awareness Week

We are very appreciative of Senator John P. Blake and his staff in advancing Pennsylvania Senate Resolution Number 13 to proclaim the week of February 26 to March 4, 2017 as Spinal CSF Leak Awareness Week in the Commonwealth of PA. The resolution was adopted on...

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#leakweek is coming soon

#leakweek is coming soon

We are busy planning our very first Spinal CSF Leak Awareness Week. Save the date! February 26 - March 4, 2017 We'll be using #leakweek #spinalCSFleak and other hashtags. CLICK HERE for more info.

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Download our updated resource documents

Download our updated resource documents

We have updated our series of resource documents, which are available on corresponding pages, as well as on our Resources page. These are written at a level suitable for patients that wish to be well-informed, as well as for health care professionals. We encourage you...

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We’re Partnering with The Mighty!

We’re Partnering with The Mighty!

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership.  We will now have a home page on The Mighty and will soon appear on stories related to spinal CSF leak on the site. The Mighty is a...

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Pseudo-Chiari or Chiari Mimic in Intracranial Hypotension

Pseudo-Chiari or Chiari Mimic in Intracranial Hypotension

Because September is Chiari Awareness Month, we wish to draw attention to a diagnostic pitfall where intracranial hypotension (low intracranial cerebrospinal fluid volume/pressure) due to spinal cerebrospinal fluid (CSF) leak is concerned. When MRI of the brain is...

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Do Spinal CSF Leak Patients Need Additional Vaccinations?

Do Spinal CSF Leak Patients Need Additional Vaccinations?

  This is a common question. In the ACIP (Advisory Committee on Immunization Practices) recommendations, pneumococcal vaccination is recommended for patients with "CSF leaks", without distinguishing between cranial CSF leak with an anatomic barrier defect and...

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Polycystic Kidney Disease and SIH

Polycystic Kidney Disease and SIH

  Today, September 1, is Polycystic Kidney Awareness Day, #PKDAwarenessDay. Polycystic Kidney Disease (PKD) has been associated with spontaneous intracranial hypotension (SIH) due to spinal cerebrospinal fluid (CSF) leaks in a number of cases. More study is...

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New Partnership

New Partnership

We launched our online Support Community for those suffering with Spinal CSF Leaks in partnership with Inspire several months ago. Inspire is a trusted company that builds and manages many secure online support communities. We are pleased to announce that the CSF Leak...

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