Topic: STELLAR BRIEFING ON CAPITOL HILL...NEWS TONITE
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Sounds like the Briefing was a success!
IT WAS A PACKED HOUSE AT THE CONGRESSIONAL BRIEFING.... STANDING ROOM ONLY! PEOPLE HAD TO STAND IN HALLS OUTSIDE!
MORE NEWS from On The Marc Media about Under Our Skin and National Capitol Lyme & Tick Borne Disease Associaton's CONGRESSIONAL BRIEFING
ABC NEWS WASHINGTON D..C. IS DOING STORY AT 5 P.M. TONIGHT You can watch NEWS CAST LIVE ONLINE ... it'll be in the 5 p.m. news cast you can watch live at http://www.wjla.com/Posts: 1176 | Registered: Oct 2002
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I love ALL of you who have worked to make this happen!
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disturbedme
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Awesome!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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daystar1952
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You might be able to watch it later if they archive it. I think most stations do this but I'm not sure.
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kam
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Sign of relief
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kam
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Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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posted
It was a very good coverage. They even mentioned the lyme bill . They also said that this bill is also help up on committee.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
Kudos to the network. they did a great job on their broadcast. Sure wish I had a way to record it though. Many, many more people need to see these reports.
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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Asked To Take a Closer Look at Lyme Disease posted 4:05 pm Wed September 24, 2008 - WASHINGTON tags: lyme disease * hearings * congress
Dozens of Lyme Disease patients took their fight to Capitol Hill.
They say the disease with high numbers in Maryland and northern Virginia is being misdiagnosed and mistreated. And they want Congress to step in.
Fairfax County (web|news) native Kelly Eisenhart quietly stood off to the side during Wednesday's hearings.
Her mission, though, expressed loud and clear.
"We need education. We need awareness. We need doctors who know about Lyme Disease. And we need doctors who know how to treat," said Eisenhart.
Her own symptoms started when she was a freshman in high school. A mysterious red rash, extreme fatigue, profound pain.
Two years and nearly 40 doctors later, she was finally diagnosed with Lyme Disease.
"I was ok until I relapsed. Nobody would help me. Nobody would help me," said Eisenhart.
And that's why she's among those asking Congress to take a closer look. They argue that because the tick-born disease both woefully misdiagnosed and under-reported, the government isn't aware of how prevalent it is.
"I would like the health aids and the congressmen who attend this briefing today to understand the seriousness of this disease and how debilitating it is for patients," said Sharon Whitehouse, whose son has Lyme Disease.
Perhaps most importantly, they want late-stage Lyme Disease reclassified as a chronic illness in part to require insurance companies to pay for long-term antibiotic therapy.
It's a push that's both political and emotional that patients like Eisenhart say they're not giving up.
"I am very hopeful. I have to be. Because I'm 22 years old. I've got the rest of my life ahead of me. And I want to live," said Eisenhart.
It's been more than 15 years since Congress last took a look at Lyme Disease.
Right now, there's a bill working its way through Congress calling for an additional 20 million in federal funds for Lyme Disease research.
So far the bill has been held up in committee.
Posts: 983 | From The sky | Registered: Feb 2005
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bettyg
Unregistered
posted
as lawrence welk would say, WUNDERFUL, WUNDERFUL!
full house and standing outside .... wow!
thanks for posting what the news coverage had to say; well done everyone!!
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Excellent news. Any feedback from any congressmen?
Posts: 975 | From California | Registered: Apr 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
psano...
I don't know which Senators went, but the people I've spoken to so far said they didn't see any there. I hope they were mistaken!! I'm still waiting to hear from some folks... so will let you know if I hear more.
BUT... I know too that the Senators (their targeted group) are really busy this time of year with the session ending.
And from what I've been told... normally one group (Senate/House) doesn't attend the others events. Different building... so different strokes for different folks.
But.. I do know of at least one House member from Virginia who snuck in there... the one who signed on the bill!
And the news article did say "dozens" of patients were there... so someone here must know something about the make-up of the crowd... and if any Senators attended and/or spoke?
Didn't Lymednva go? Or not? I really can't remember who it was from LymeNet that said they were going.
Olly olly, all come free. Come out, come out where ever you are!
PS... I want to know the important stuff!
Like... what did everyone have for lunch!!!! Yep, I'm getting hungry!!!
shazdancer
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Many had pledged to send a staff member, so hopefully someone from their office was there. I got promises from my Maine rep and the senator from Ohio that they would send someone, so I hope they did.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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sometimesdilly
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posted
tin-
i would think shaz has it right- that staff members would the ones tasked to go.
even if not a one actual,in-the-flesh Senator showed up, it doesn't mean their staffs weren't there...
as we all know, it is staff, not management, that actually understands anythign or gets anythign done.
Senatorial staff WAS there, right, organizers??
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
tin-
i would think shaz has it right- that staff members would the ones tasked to go.
even if not a one actual,in-the-flesh Senator showed up, it doesn't mean their staffs weren't there...
as we all know, it is staff, not management, that actually understands anythign or gets anythign done.
Senatorial staff WAS there, right, organizers??
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Yes, my representative said he was going to send his legislative assistant, so hopefully the aides accounted for a lot of the attendees - hoping for an update soon, it sounds like it went well though. Waiting for an update as well... -karen
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daystar1952
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I was told today that National Capitol Lyme will send out a press release about the briefing...as soon as they can
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daystar1952
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I was told today that National Capitol Lyme will send out a press release about the briefing...as soon as they can
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daystar1952
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The National Capitol Lyme Assoc. will be sending a press release about the briefing soon. The overall feeling was that it went extremely well in spite of a few road blocks they ran into. A well attended briefing , they were told is 50 people and they well surpassed that. So...more will be coming out soon.
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I spoke to Monte Skall briefly today and it does sound like it was a success - they are super busy today, because the follow up viewing of the film at the Avalon Theatre in DC is tonight, but after that they will post a quick update, and will follow up in a few days with a more comprehensive update. She said that there were a lot of House top aides there (she said those that sent aides did send their top aides, as opposed to interns, which is good), and 10 house members themselves, I think she said about 80 in total for the luncheon, plus a lot of latecomers who were standing-room only, I think she said about 140 or something (forgive my memory, I wasn't taking notes when I spoke to her). They played about 25 minutes worth of excerpts from the film, which got a standing ovation when it was done, and then the speakers were Andy and Pamela, plus two doctors (forgive me, I don't remember the names). Someone filmed the whole thing and they will be posting that on their website for viewing once everything is settled down, but all in all it was a very well attended briefing, especially seeing what was going on at the same time with all the financial mess. Looking forward to seeing their official press release as soon as that comes out, should have a lot more details. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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posted
Wow, great news! Thanks cs for posting these details. Having top staffers and some House members watch portions of Under Our Skin is amazing. Can't wait to see the updates.
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posted
Wow, great news! Thanks cs for posting these details. Having top staffers and some House members watch portions of Under Our Skin is amazing. Can't wait to see the updates.
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posted
Wow, great news! Thanks cs for posting these details. Having top staffers and some House members watch portions of Under Our Skin is amazing. Can't wait to see the updates.
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