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.

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.

 

Dr. Maitland to address EDS-NYC Meeting Tuesday, April 2, 6:00 PM

Dr. Anne Maitland, the top expert in the NY area on EDS and Mast Cell Activation Disorder, will speak at the April EDS-NYC local support group meeting Tuesday, April 2, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.

Dr. Maitland was named one of New York Times 2011 Super Doctors and one of America’s Top 21 Women’s Doctors by Lifescript.com in 2009. She is a Fellow of the American College of Allergy, Asthma and Immunology and a member of the American Academy of Allergy, Asthma and Immunology.

Anyone who ever had an unexplained or unusual  allergic reaction should come.

We are extremely fortunate to have her come. If you only make it to one meeting this year, this is it.

We welcome all, 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.

EDS-NYC Meeting Monday, February 25, 6-8:30 PM

The EDS-NYC local support group will meet Monday, February 25, 6:00 PM, at 1395 Lexington Avenue, New York, NY.

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

Again we meet 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 via comment (or email) so we can estimate group size. The group is growing rapidly and outgrew our old space. I may get swamped and not reply to each RSVP, but the count is important.

As our numbers grow we really have the opportunity to chart a course for this group and coordinate efforts to really help one another on a larger scale. This meeting will focus on ideas and goals, skills and resources, unmet needs and opportunities, whatever priorities we can agree to.

  • The EDS-NYC Dr. list continues to be well received. Are there other resources we could pool and provide?
  • May will be EDS Awareness Month. Would anyone like to help a bit on coordinating our efforts?
  • The feedback from Dr, Jessica Davis’s talk last month was extremely favorable. Perhaps we could find help arranging more speakers?

This is a time of many opportunities. Now is a chance to pick a few priorities, and plant the seeds for more good meetings.

Hope to see you there,

Kurt

EDS-NYC Meeting Wednesday, January 23, 6-8:30 PM

The EDS-NYC local support group will meet Wednesday, January 23, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.

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

We will have a speaker, Dr. Jessica Davis. Dr. Davis is Chief of the Division of Medical Genetics as well as an Associate Professor of Clinical Pediatrics at Weill Cornell Medical College and Associate Attending Pediatrician at New York-Presbyterian Hospital and the Hospital for Special Surgery.

This is a new address for the meeting, 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.

EDS-NYC Meeting Tuesday, December 4th

Tuesday, December 4, 2012, 6-8:00 the EDS-NYC support group will meet at 40 Exchange Place, Suite 1600. Hope to see you there.
We welcome all, especially those who are not yet diagnosed but have questions.
We will discuss the most useful resources we have found and share information with the group.
Our EDS-friendly recommended doctor/PT list is up to 88 names. We will update the list in the meeting.

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The address is one block south of Wall St. at the corner of William St. and Exchange Pl. It is also two blocks east of Broadway.

Public transportation is the best way to get there based on traffic and limited parking.

Subway:

      One block south of the Wall St stop on the 2/3 line.

 

      Two blocks east of the Wall St. stop 4/5 line.

 

      One block from the Broad St. stop on the J/Z line.

 

    And it’s close to the Rector stop on the #1 and R lines.

Take the elevators on the right side of the lobby to the 16th floor. Room 1600 is clearly marked.

There are a couple steps out front of the building, but there is a service entrance to an elevator. Please send me a message if you need additional help or access is an issue.

Looking forward to seeing you there.