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Tag: advocacy

EDS Awareness Month – Awareness Meetings at the State House

Jon has connections at the state house, and he had set up kind of a meet-and-greet on May 24th. Several of us met with  a representative of the House Speaker, a House Representative, and Senator Jehlen’s Legislative Director. We talked about what Ehlers-Danlos Syndrome is, medical marijuana, the challenges chronic…

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I Met With My Congressman!

After meeting with Senator Jehlen, I felt more confident to meet with other elected officials, so I decided I wanted to meet with my congressman, Congressman Michael Capuano. Again, I was surprised to even get a meeting – I mean, he’s a congressman! He works on Capitol Hill, and he’s…

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