Saturday, March 13, 2010

Ben's Friends - Chiari Malformation & Aicardi Syndrome

Ben's Friends, the Patient to Patient Online Support Networks project, continues to roll on. We grew nicely in February and totaled 115,000 Page Views for the month. We're kicking butt and we're helping over 3,000 people find information and support for their rare diseases. It feels really good to be a part of this and increasingly we're getting emails on how to help. We've come up with some ideas, ranging from very easy to ongoing part-time help. Send me a message if you're interested!

This week we launched two new networks: The first is for Aicardi Syndrome which is a genetic problem on the X chromosome. Sadly, it's almost always found in baby girls and results in infant seizures.

The second network is for Chiari Malformation which consists of a malfunction of cerebrospinal fluid and results in debilitating headaches. 

We picked these networks because people wrote into us with a request to start them. We've just launched these networks so please help spread the word on Facebook & Twitter. Thanks so much for caring!