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» LymeNet Flash » Questions and Discussion » General Support » Live screening TBI working group - for Tuesday

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Author Topic: Live screening TBI working group - for Tuesday
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They just adjourned today, this is the url for Tuesday - 9am EST/6am PST - 5pm EST/2pm PST

I came late to watch, so missed most of the meeting. Don't know the name of the woman who facilitated the later part - she's an ACT-UP activist from the 80s and 90s who helped get AIDS taken seriously -

She said serious work began on handling the AIDS epidemic thanks to ACT-UP and I think we're at the same parallel time right now, with this TBI working group starting its work. She said it took 3 years, starting in 1994, to get it moving into care, research, etc.

She mentioned 4 parameters for doing this work -

1) Have proximity to the issue. We do! 8 people testified about the impact of Lyme/co's. Lorraine Johnson, CEO of, testified by phone and slides about MyLymeData, a patient-centered database of 9,700 patients, being used for research and political purposes.

2) Change the narrative. As in legitimize what's going on. Might even need to change the name!

3) Be willing to be uncomfortable and make others uncomfortable in order to get change going. I'd say, be willing to stretch yourself to do things you haven't done before. It's empowering to find out you can!

4) Protect the hope that things can change and get better. I agree with this - it happen over time. We've got a lot of AIDS handled now - People are able to live with it instead of die. So now it's Lyme/co's turn.

Posts: 13102 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator

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