Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
We are planning a National Rally to educate officials and show them our mounting numbers and the needs of Lyme patients across not only the US but Globally.
I ask for your support to bring all LYME GROUPS and all LYME CITIZENS or FAMILIES together to stand up for not only us--but also for those who will come behind us.
I would have liked to do this in DC, but nothing was available for over 5000 people before fall.
I would like to see all Attorney Generals come together for this task of drawing up a New Bill such as the Ryan White Act,
or pulling the current HR 1179-with changes- that is so desperately needed here,
as the current Lyme Bill is buried in the Energy and Commerce Committee, and does not appear to be forthcoming after years of sitting in committees,
and as all eyes are on the US for dissemination of information and guidelines.
We are planning this for the weekend of Aug 21/22 or anytime thereafter at site links I have included.
They have facilities to accommodate 1000-200,000. with air conditioned arena, show halls, and facilities for varied needs, including camping hookups and electricity.
With paved walkways and access to all areas to wheelchairs, a fishing lake, and airport next door. These were the best pics I could find to examine the grounds. Which clearly show the W/C access.
We must show our numbers to get support for funding for Lyme and Morgellons as our number are growing astronomically fast. I have at least 3 new cases in my city in the last 2 weeks.
We are planning a Breakfast Buffet. Honored Guest's and Speakers. A Balloon release with messages. A Walk/ride Rally with personal signage. Temp. Lyme tattoos for the kids. Lots of great vendors. Including Amish made baked goods. A prayer service with a Lyme talent show.
And always open to suggestions. And forever humbled with offers to help.
At this time we are thinking donations at the door to cover grounds cost which is minimal with leftover proceeds distributed to organizations that help patients.
Thank You for any suggestions and help to achieve this goal.
We can do this if we UNITE as ONE in this our IMPOSSIBLE DREAM.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
sounds great- I wish we could have all the bedridden Lymies show up via camera!
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Pine...
Bless your heart. You have so much spirit. Your research is fantastic. Your idea is supportive of the community and very interesting.
Questions- It took me a while to figure out this rally was to be in Union County, KY? And that you had hoped to have over 5,000 people attend... even if it were to be in DC?
As for your hope that groups and patients would join in to help and attend.... if I may suggest....
As far as I know... some things to consider... take it or leave it...
Most members of large groups are swamped with busy and stay that way 24/7. They multi-task and have way too much on their plate as it is.
What the public sees is only 1/200 of the work that they are doing.. IF that much.
They are sometimes recruiting new folks to help handle the heavy load they are already under ... so there is no "free" time for most to put into another project... especially one so large.
And they have to allow time for unexpected fires to be put out that are constantly popping up (IDSA) and health problems that put them on the side lines.
Most don't have funding allocated (often by law they can't do it) for this type of (political) event.
Most individual patients can not travel well due to cost (strapped for $) and illnesses of their own and/or their families.
They are struggling to get by on day to day things like meds, appointments, utility bills and food.
And those who could travel (health wise) are trying to get back to their normal lives and working their jobs, etc... and can't afford to take off.
With that in mind...
To have a turn out of 500 would be absolutely amazing.. and having 500 show up might be the most that ever turned out at a Lyme related event, ever.
As a community (generally) we are not really good at "showing up" (no matter how great the cause) due mostly to our chronic illnesses and disabilities.
I personally can't offer to help, although I'd love to, but I am swamped too ... and I don't know anyone else (or any groups) who can make that offer.
I absolutely 150% do NOT want to discourage you... as I am often accused of doing when interjecting my thoughts about an upcoming project.
I just don't want you to be disappointed and I want you to know the back ground and history before a lot of time and effort is spent making the plans.
Being ignored or turned down when you are asking for help will often not be explained properly, if at all ... so don't take it personally if you are not getting the reception you'd expect.
If you proceed with the plans, I wish you the best of luck and thank you in advance for your efforts.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"If you are too sick or weary with your own affairs we all understand."
Hey Pine...
Actually it is not MY affairs that makes me and others so weary. It is OUR affairs... the Lyme communities affairs.
I am already sick and disabled, as are most of the people who have been working for years trying to move us forward.
Like many others, I can't get any better so there is no need for any of us to be continuing this battle as we do day after day... at least not for our own self-improvement.
We do what we do to try to help those who will be following in our footsteps.
That's all we can do.
I wish you luck and if I had the ability to assist, you know I would.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Tinny I am sorry you feel we are defeated and cannot accomplish this because we are too sick or poor in Lyme.
I am sure You are appreciated for your works. Fact is thousands have been doing works for years.
And we still don't have funds and protection for our doctors who know how to treat.
What, when and how can we shift this failure to success?
This is OUR Quest now as it has always been.
Hopefully before more lives are lost. What choices do we have?
Advise newly diagnosed patients to move to Mexico where they can get treated for over 4 weeks?
Or continue to suffer-as it will not be long before all become like Dr. Jones, Dr. Jemsek,
Dr. J., Dr. Burrascano and many others who have just given up on us?
Maybe some of the families would come in their place. I do believe if families and patients like Ryan Whites had not shined for a day of rallying
in Washington they would still be mired in rhetoric and labeled as dying with a gay persons
disease as well as denied antibiotics for their host of bacterial infections and left to die.
Those in attendance at the signing of the RYAN WHITE HIV EXTENSION BILL by President Obama.
* Jeanne White-Ginder, Ryan White's mother * Senator Tom Harkin, D-IA * Senator Mike Enzi, R-WY * Senator Tom Coburn, R-OK, not confirmed
* Representative Henry Waxman, D-CA * Representative Frank Pallone, D-NJ
* Representative Joe Barton, R-TX * Speaker Nancy Pelosi, D-CA, not confirmed * Ernest Hopkins, Policy Chair, Communities Advocating for Emergency AIDS Relief (CAEAR); Federal Affairs Director, San Francisco AIDS Foundation * Frank Oldham, Jr., President and CEO, National Association of People with AIDS (NAPWA) * Julie Scofield, Executive Director, National Alliance of State and Territorial AIDS Directors (NASTAD)
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I suppose this is just coincidence. Please look at [email protected]
HIVMA Board Member Appointed to Presidential Advisory Council on HIV/AIDS
The director of HIV/AIDS for Kaiser Permanente and an HIV clinician and researcher since the 1980s, Dr. Horberg and PACHA's other new members met for the first time during President Obama's administration earlier this week in Washington, D.C.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I don't know if it matters that Congress will Not be in session the entire month of August....? So legislators will not be in town.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I believe if all the families of those sick with tick born diseases participated in this rally, we could get somewhere.
But...my family wouldn't come. They can't even write a letter, or read a book.
It's....Oh, we are so upset you are sick Mary. We pray for you Mary.
So I ask them for action......
They put their heads down in apathy.
We're on our own.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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