Month: April 2013

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EDS-NYC Meeting Wednesday, May 1, 6:00 PM

EDS Awareness month is upon us. Come join us at the May EDS-NYC local support group meeting Wednesday, May 1, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.

The agenda is to develop strategies to raise awareness among key constituencies such as:

  • Informing doctors, and other healthcare providers
  • Gaining media coverage
  • Other awareness-related events

All are welcome, especially those who are not yet diagnosed but have questions.

The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets.  For transportation information, the nearest subway is the number 6, which stops at 96th St.

Please RSVP so we can estimate group size. Please include desired snack food for brainstorming at the meeting. I’ll pick up the most popular item, provided it is not lobster stuffed with caviar atop a pyramid of filet mignon.

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Mast Cell Activation Syndrome 101

Noted Allergist/Immunologist Dr. Anne Maitland spoke for almost 2 hours about mast cells, EDS, allergies versus hypersensitivity, and much, much more April 2, 2013.

So far the Ustream link is ready to go:

http://www.ustream.tv/channel/eds-nyc

You need to create a Ustream account, but that’s easy or you can log in with Facebook.

The 24 minute segment, which currently is the bottom of the three segments on the list, is the first one. That starts with the introduction.

We are all extremely grateful to Dr. Maitland, who took so much of her time and was so generous with information. She mentioned that two years ago there really was no research on this mast cell activity, which makes this pretty cutting edge.

I hope to have the other copy of the video up in good time, but seeing the good quality of this one really does sap my current motivation.

 

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