Neurology Now - From the Editor: Not So Rare

In the current issue of Neurology Now, their Editor-in-Chief expresses an interest in hearing from those w/ a rare neurologic disease & encouraging to share experiences of getting a diagnosis, any involvement in clinical research, and advice for coping with a rare neurologic disease.
Here is the complete article @

Thank you for sharing this interesting article Patti. Do you know if anyone in our Network have be in touch with neurologynow to let them know about our support Network? Also, if you don't ask me asking you, have you shared your experience with them? Thanks Patti.

Hi Lesley,
I don't know if anyone here has been in touch w/NeurologyNow re: our community, but it's an excellent idea! :)
I've written them several times, but have never gotten a reply back. :(
Since I have 2 neurologic disorders (2-fer-one special! lol) I'm working on writing them AGAIN, so we'll see. ;)

Patti, I love your attitude and your 2-fer-one special! :)
I look forward to you hearing from then THIS time!