November Meeting Wrap-Up

Vasculitis Foundation in New Mexico
Albuquerque Chapter Meeting
November 18, 2010
Deli-Berry Restaurant

Present:
Joseph C. (CSS family)
Meaghan C. (CSS patient)
Dennis W. (WG patient)
Rupal P. (Family - WG suspected, mother still undiagnosed)
William C. (CSS family by telepresence in Skype)

We met at Deli-Berry. When I arrived, Dennis and Rupal had already introduced themselves and were busily sharing information. Rupal mother is still undiagnosed with a pending Wegeners diagnosis.

I initialized Skype and called William, who had indicated an interest in joining this months meeting. He remained connected throughout the meeting and as the only remote participant, he was able to use video and text chat. With multiple recipients, only voice connections are possible.

Most of the meeting was spent sharing links to sites that are already available on the Education page of www.nmvasculitis.org. We discussed the usefulness of www.uptodate.com, for those who can get access. Recent changes to that site allow for temporary memberships, so it is now affordable to most anyone. Rupal has two family members who are physicians, so she sends them the links for which she wants full text, and they send her the information.

We all shared the names of a few doctors, and a huge oversight was corrected. We learned that NM Arthritis Associates has several rheumatologists on staff who are already familiar with vasculitis. Those names will be added to the list soon. William used to be a board member for the NM Arthritis Foundation, so he and I may have more to talk about in terms of learning from that experience to advance the efforts of this chapter.

You are all encouraged to share the names of your good doctors who know about vasculitis on the Vasculitis Doctors Form. When you do, those names are made available to benefit other patients. If you do, then others will be more likely to also share and you will likewise benefit. So, sharing information is in your best interest.

Joseph discussed that it would be nice if access to full text articles was a membership benefit for paid membership to the Vasculitis Foundation. Then also placing them in an corss-indexed structured, database, like a WIKI. Imagine being able to search through articles on any topic that interested you. Just an idea at this point but leveraging the army of members to find and submit links and articles, then having it peer reviewed to validate the information. What a lofty but also worthwhile goal.

We did Skype at the meeting between about 6PM and 8PM. One person Skyped in and was able to participate more or less fully with the meeting.

I will use that technology again at the next meeting. You may also can find me in Skype from time to time. I am more often online in Google, but have access with Google, AOL, Skype, Yahoo, and even ICQ.

There were five at the meeting, including one remotely. Which was awesome.