valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Lyme Briefing for Congress on September 24 We Need Your Help!!
What we are doing
We have an historic opportunity to brief Congress on Lyme disease. With the help of Senators Dodd and Lieberman, we have a luncheon briefing scheduled in the Senate Russell Office Building on September 24. All members of Congress are invited. Speakers will feature Andy Wilson, director of Under Our Skin, and Pamela Weintraub, author of Cure Unknown:Inside the Lyme Epidemic. Clips from Under Our Skin will be shown.
� Telephone, email, write a letter, or best of all, schedule to meet with them in person in their home district office while they are home on recess in August.
� Ask them to attend the briefing. If they cannot attend, request they send their senior staff. Congressmen are the most responsive to requests from their own constituents.
Your voice is vital to success! Attached is a point paper to aid you in your discussion.
��DONATE:
� Sponsors are needed to provide the book Cure Unknown and the full length DVD of Under Our Skin to all 535 members of Congress.
� You can even include a personal note to your own congressman! Make a tax-deductible donation and submit your personal message at www.NatCapLyme.org/congressbriefing. Or, you can send your donation and note to NatCapLyme by mail to our PO Box.
� Within days you will be able to make your contribution and send your message on-line. We need donations by Aug. 30. It will cost $17,000 to provide copies to all members of Congress. NO DONATION IS TOO SMALL!
Why it's important
It has been over fifteen years since the US Congress has investigated Lyme disease, its diagnosis, treatment, and the issues surrounding its late-stage form. Every two years a new congress is formed. Lyme disease bills have been introduced repeatedly, but none has resulted in action. We wish to raise awareness and request a new congressional hearing so that our legislators can facilitate unbiased research. To quote Pam Weintraub in Cure Unknown, ``...if we are ever to unravel the mysteries of Lyme disease and find a cure, it is science--pure and unadulterated--that will lead us home.''
The release of the documentary film Under and Skin the book Cure Unknown present the Lyme community with an unprecedented opportunity to educate our federal elected officials about the disease and the incredible toll it takes in human suffering.
Let's all work together toward this important goal that will benefit everyone affected by Lyme and Tick-Borne disease.
[ 01. September 2008, 06:40 PM: Message edited by: valymemom ]
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thank you. Since the National Capital Lyme and Tick Borne Diseases Association is right here in the capitol - as a group we have the unique opportunity to be so close to our representatives.....a metro stop away.
As a group who read Pam's book and viewed Andy's film at the Silverdoc's documentary festival - it just seemed the right time to try to reach our representatives and encourage review, research - just like Pam's book lays the groundwork for.....
Andy's movie shows the human toll. Together they are powerful.
Congressman Wolf from VA held his educational meeting expecting 25 and there was a turnout of 300 on a Tuesday evening at 7 p.m.
This is an opportunity to push for hearings since the last was when Dr. Burrascano spoke to Kennedy's committee in 1993.
That's why we also want to get a book and movie in each representative's hands! (When we gave congressman W. a copy back in June - he read it.) If you go to the natcaplyme site you will see how to make this a reality.
This should probably go to activism - but I think it is important and have it here so it is read.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
very interested in doing what I can to help. The link on your post didn't work, at least on my computer.
My daughter and Her grandfather have been in constant contact with congresswoman Jane Harmon of calif.
My daughter is serving in the Military and inspite of positive tests the tricare system and the military doctors are refusing to accknowledge her illness. She's paying out of her pocket for Civilian doctor visits.
Do you have a press release or something I could print out to send to Jane Harmon?
Also what is your address?
proudmom
PS....Who is doing the briefing and will there be public testimony?
What is the estimated cost of one book and one dvd? At bare minimum that would be a good donation to start with.
Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Sorry about the link.
www.natcaplyme.org should open and the information should be on the site.
Your daughter could email Jane H. to get in touch with congressman Wolf whose office is a door or so away from Pelosi and Pallone's.
At his educational forum, he heard from a veteran about the lack of support from the military, and he encouraged her to send all of her correspondence to him.
He is going to post a q & a with the 3 doctors who spoke on his government web site because there were so many questions and comments (as you can imagine)
Folks were very appreciative for his concern. He has committed to attending the Lyme briefing that will be held September 24 in one of the senate caucus rooms.
If you could press Jane Harmon to attend or at least send her top health staffer - that would be great.
A notice concerning this is being sent to all of our support leaders across the country this Sunday evening with the hope that they pass it on to all of their members.
We must be the ones to press our own representatives to attend.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I had problem finding the page from the home page, so went back to the original post, and just deleted the (.) at the end of the link.
posted
If ever the time is right, it is NOW! Everything is lining up - the book, the film, the IDSA Guidelines Review! Applications for participation on the review committee close October 1. And the briefing on Sept. 24! So hopefully, we will get an investigative hearing out of this for long-term benefit, but also the short-term benefit of a truly unbiased and above-board guideline review! If Congress is made aware of this procedure and can be convinced that, at least a sub-committee should track it to be sure the agreement is followed to the letter, then we may see a big improvement in patient care possibly next year!
Donating has been made so easy on the website! Just click on your state flag or select your state, and you will get the names of your legislators in both branches. Any amount will be appreciated.
I am sure there will be an accounting made available as the donations begin coming in.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
northstar and adam
Thank you for your help.
You know, this can be successful. I spoke with someone at Wolf's event and her father is very friendly with both senators (forget which southern state)
but that is the kind of wonderful connection that can come when we spread the word to family and friends.
As for donations so far - I know our own members of natcap have started donating, but as you can see, it is a huge amount we need in order to put a movie and book in every office on Capitol Hill.
We believe it is possible, though - don't you!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
When you visit the web site northstar posted please
click on the red boxed word "Contribute"
that will take you to the page with each flag from each state and you click that to find your senator and representative
our volunteer web master has done an excellent job in showing all of our representatives
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Yes, thank you!
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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I am contacting all my family members and would like to know what the cost for each individual member of senate or congress it projected to be.
This way I can give them an idea of how much to donate. Personally I'm not in a position to make any donations but I'm sure many of my family members will be able to.
I know the donations are through the website so I will be sending that info. along also.
Sorry for so many questions but I know I will be asked and would like to have something to tell them.
One more question.....are they going to track which congressperson is fully sponsored?
Thanks again for all your hard work.
proudmom Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
proudmom
I think I saw on the website (when I clicked on my Congressman Wolf) that there are donation amounts below to choose from.
Understand that we are aiming for the total donation amounts to equal the $17 k needed for all our federal representatives to receive the book and movie.
But even if my family chose to give $5, we could then write an email message to congressman Wolf to be included with his gift.
20 folks in his district (no limit) could choose to donate any amount and click on congressman Wolf and write an email message. There is no limit.
The collected monies, of course, would exceed the cost of a book and movie for him.....so the money would be used toward these purchases for other representatives.
I hope I am making sense.
I am a member of natcap and presently serve as the facilitator of the local Fairfax support group which is a subset of the larger natcaplyme support group. I have been on a committee this last month working on executing this briefing.)
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I made mine and sent out a request to all my friends, family and co workers with a link and copied the page information to them as well!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
This is wonderful - exactly what we need! Thank you so much for doing this, I will definitely be making a large donation (need to discuss with husband how much we can swing), as well as contacting many friends and family and asking them to donate. I have been showing the DVD of Under Our Skin to them all, which I think will definitely help so they can see why donation is so important.
Will the DVD's and books be delivered to the congresspeople before the meeting or during? It would be great if they could see the film and read the book before the actual meeting takes place - more would be accomplished at their meeting that way I would think.
And that would be great if we could be kept appraised of the fundraising progress too. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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quote:Will the DVD's and books be delivered to the congresspeople before the meeting or during? It would be great if they could see the film and read the book before the actual meeting takes place - more would be accomplished at their meeting that way I would think.
was wondering the same and thinking the same!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
All of your enthusiasm and comments are appreciated. I do not think we have made that decision, yet.
Don't you feel the tide turning? I know locally here, there is more interest by our local newspapers and our local TV stations.
We are blessed to have wonderful spokespeople like Andy and Pam.
They shine a spotlight on the nuances of tick borne disease. They shine a light on the chronic community and the dismissed scientific research.
We have them to thank for making it happen at this time and this Capitol Hill place!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
^for reading
Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh fun... politics again!
On my way out of town shortly... but saw this just now and thought I'd put in my 2 cents before I go. Hope to be back for the event!
May I suggest? And ONLY because I've had politics on my plate... morning, noon and night for a good while now.... uggggggg... and have spoken to at least 2/3 of the reps at one point or another.
VIRGINIA RESIDENTS
If you want to try to educate Congress any more than they have been in the past... keep in mind the LDA and other volunteers around the country have been doing this for years.. chipping away at the old block, bit by bit.
BTW- The patients and groups who pitched in for action alerts did an amazing job with what they had to work with. Hats off to everyone who has educated anyone along the way.
Anyhow... To save time and effort at this point in the game...
These are the Congressional reps (list on next post down) in Virginia who didn't sign on as co-sponsors to the bill. It doesn't mean they weren't educated or they didn't support it.
It only means they didn't sign on as a cosponsor for a number of reasons... mostly... you got it... political reasons that have nothing to do with Lyme.
The most educated in VA is Wolf and his staff. They signed onto the bill after volunteers spoke with them early on. They are good support and good folks and have had a grasp on the situation.
The others were a pleasure to work with... and with residents pitching in and writing to them... they were educated and saw the need to help. It took a while because they are very busy.. but Boucher, Drake, Forbes and Goode did listen to the requests for help and saw the need in their districts. Good for them!
The tuff cookie in VA would be Senator Warner.
I'll give 5 bonus points if you can get him to do something! And from what I remember.. he is a horse person. I would think that those with horses in the VA fields and woods would take more interest in ticks? Oh well...
But doesn't he end his session this year? I forget.. does he retire now? I think so.. but don't quote me on that. Hard to remember all the details.
Sooooooooooooooo.. rather than push him to help us... might want to focus on the list for those who didn't sign on?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
MARYLAND RESIDENTS
Not to worry about your reps. ALL of our Maryland reps signed on to cosponsor the bill early on and have been very helpful. They are very well educated already.. and have supported our efforts from the early days... even when some were state legislators prior to being in Congress. GOOD and helpful people... and their efforts have been much appreciated over the years.
One of our reps is leaving this year.. two actually I think... and it is possible a Hopkins doctor will be elected to fill one of the spots.
But.. maybe Maryland residents could "adopt a state to educate" if you are going to this event?
Some states, like Arizona, Colorado, Alabama, LA, Minnesota, Missouri, and Ohio have NO reps who signed on to cosponsor the bill.
We need activist's in those states educating legislators BIG time. Have you ever been to those states, lived there, got family there? If so... pick a state to adopt. Spread your joy around.
States like Texas... that FINALLY got ONE .. YIPPEE ... have been trying SO hard but have a hard road to hoe and some stubborn reps.
I believe their Governor was on board with IDSA vaccine for the little girls- the virus vaccine.. wanting to make it mandatory for everyone because of IDSA educating them to the value of the stuff they promote- so there may be a little hitch in their giddy-up?
Anyhow... they have lots of reps in Texas so a low showing does hurt... but once you get ONE to sign on... the rest are a bit easier.
````````````````````````````````````````````````
This announcement said..
"It has been over fifteen years since the US Congress has investigated Lyme disease, its diagnosis, treatment, and the issues surrounding its late-stage form."
Actually, they are doing that on a regular basis, even now... so not sure where that is going or what it means? Anyone have a clue?
It said.. "Every two years a new congress is formed"
RIGHT! BINGO! For that reason...
May I suggest waiting then until the new Congress is in session and the new members are there to do political actions?
The reps in there now are already educated. By waiting till after the new ones come in... efforts could be focused on them... and LOTS of money, energy and time could be saved.
It said.. " Lyme disease bills have been introduced repeatedly, but none has resulted in action."
Actually, I was told by Congress that it sometimes takes 20 years to get good bills, even ones that are much needed and desired by all, passed. We need to understand that.. even if we REALLY don't like it.
Not to mention the IDSA has publicly and privately fought every one of our bills. And although it is sad... they have "credentials". For now anyhow.... HA!
So having a group that claims they are experts and who insist chronic Lyme doesn't even exist... and them not wanting us to succeed because if we did it would break up their little party..
And insurance fighting us... and Medical Institutes (Yale, Hopkins, Hold the Mayo, etc) busting our chops left and right... any progress we have made is amazing.
The bills I've seen that have passed most recently are what I call the "greeting card bills". Example- A bill to celebrate birthdays of anyone and everyone, members length of time in Congress, an athlete's accomplishments, a death of a hero, get well cards, etc.
We need to remember that those in Congress set the agenda... we don't and can't. What they chose to work on or pass is NOT up to us. By looking at what bills your own reps sponsored and got passed is a BIG wake up call. It was to me.
It will for sure help me determine how I vote. I want to see work and results... and will support those I see making an effort.
And.. back to the bills... like the saying goes... "Education is what you get if you don't get what you want".
The trick here is for ALL people in the Lyme community to support the same effort and not confuse the issues because they don't happen to like this-or-that tidbit.
No one wins anything when this happens.
Working together.. even if the bill is not perfect in everyone's mind, is the key. We all know, no bill or action will EVER be perfect in everyone's mind, so we ALL need to compromise sometimes and work in one strong force to push forward.
After all, WE don't make the bills.. the Congressional writers, lawyers, etc do.. and the Congressmen approve them before they put their names on them... and before the public even sees them.
My bet is if ALL patients and groups work TOGETHER, we could make more progress than we are now.
We are becoming a powerful force... but when divided we are only hurting ourselves and so many others who depend on us to make things right.
I think many times we are our own worst enemy by not joining together for the good of everyone... and THAT is why things don't get done in many cases. That also leads to so much wasted time and effort... so sad too.
It said.. "We wish to raise awareness and request a new congressional hearing so that our legislators can facilitate unbiased research."
Actually.... that is exactly what is being done already... and what the goal of the bill and all the ongoing efforts have been all along. Before another new agenda is acted upon ... I DO hope someone checked on what is already taking place?
I would REALLY not want to see another clash of ideas and agenda's happen. We've come too far for that.. and are already on the brink of some new things being finalized... and can't afford to have problems popping up now.
Check here to see who you can focus on to save time and make your educational efforts count. Might also narrow it down by those who won't be in office next year.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Breaking this up again as I just noted that I talk WAY too much!
Just mentioning it in case you hadn't noticed that about me before.
Now that I've worn myself out writing all this... might as well go all the way while my chatter box is in full gear....
May I also suggest?
Rather than fork out money to buy Congress members a book and DVD... which I am not sure.. are they are even allowed to accept "gifts"??? Maybe so.. but I hope someone checked as I was told that they can't last year.. but they may have been teasing me because it was a can of bug spray... but someone mentioned it could be a problem?? Anyhow...
I think most Congressmen can actually afford a book and/or DVD themselves. My bet is their daily lunch costs about what a book does? And their supper costs about what the movie would in Washington DC.
Perhaps instead of collecting to give them free stuff.... they could have a coupon for a dollar off as an incentive if they want to buy a book or DVD?
I know.. I know.. not the smartest idea off the top of my head..
But spending $17,000.00 for something they will probably not read... you don't know how much they have that they don't read now and it is all free... and they admit very quickly they don't want MORE to read... as they are overwhelmed already...
But maybe just talking to them to educate them and leaving a brouchure behind would be a good thing?
Or leaving one movie and book behind for them to share would be better? Or showing the movie to a group of them... then letting them get excited and WANT to buy the movie and book for themselves.
It sure would save a ton of money out of patient's pockets!
Of course, do as you please with your money.. and I absolutely don't want anyone to think I am trying to cut sales for the book or the movie.. NOT AT ALL. I loved the movie and support it 100 percent. And I am waiting for the book to be on the internet or in large print so I can read it. So that has nothing to do with my suggestions.
I just know that reading is NOT considered to be a fun thing for many of the Congressional members and staff because they are overloaded with it already. Advise from their offices has ALWAYS been to make what you send them short and sweet... two pages max... or it won't be read.
Ok... I'm done. The mouth has worn itself out. Good thing too you say? I know. HA!
Just hope something here might save someone some time and energy.. and maybe some dollars? I am happy to see folks wanting to educate others.
posted
You have got to be kidding me. This is the best idea I have heard in a long time, and you are trying to discourage it? I honestly don't see how getting a copy of the movie and the book into each of their hands could possibly be a bad idea - sorry.
Just made my donation, thanks so much to those who are behind this! -karen
Posts: 205 | From northern california | Registered: Apr 2008
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bettyg
Unregistered
posted
hi karen,
fyi since you just joined april 08...
little more background on tincup, who has been at LYME ACTIVISM FOR 20-22 YEARS; not months. ********************************************
as she has stated, she has been a very VOCAL, "OUT-SPOKEN" ACTIVIST for years who has stepped on toes to get them to LISTEN.
tincup, NO OFFENSE MEANT; you/I are both alike that way in order to be heard and taken seriously! xox
I do understand where she is coming from, and believe me; why should be lyme patients KEEP REINVENTING THE WHEEL?
let us use the expertise and she has generously given you more info on the states she has personally worked with.
she's done many behind the scenes things you or me NEVER see, but is passed on the the top leadership of lyme and our ILADS LEADERS.
Last year member PJ LANGHOFF, WISC. author, sent a copy of her THE SINGING FOREST dealing with her lyme disease and being in the court systems for years and still is, to IOWA'S SENATOR TOM HARKIN; chair of HEALTH COMMITTEE.
She sent it to one of Tom's local IOwa offices nearest her. Last I ever talked with her, she had NEVER gotten a thank you for it or a reply to state IT HAD BEEN READ!
i have tom's state director's email as of 1 week ago, and will send her a note before i forget it now.
asking her to find out if TOM EVER READ IT, and what IS THE POLICY OF SENATORS/HOUSE REPS TO RECEIVE "GIFTS"; such as books and DVDS on given subjects.
when I hear back, i'll post results to this post.
I also agree with so MANY POSITIONS BEING REPLACED IN JAN. 09, I'd rather spend the money being collected for:
DR. CHARLES JONES DEFENSE FUND for his upcoming MONTHLY HEARINGS! *****************************
I do agree we, LYME PATIENTS IN MANY DIFFERENT "LYME OFFSPRING ASSOCIATIONS" are NOT working together, and that our efforts need to be:
ONE FOR ALL; ALL FOR ME! ***************************
instead of me first then we'll work on yours!
that's my perspective on things, and i'm sticking to tis story!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
CS...
I'm surprised to hear you say I am discouraging this idea. I hope others don't think the same, as that was not my intention at all. Remember.. each one reach one.
I simply thought some energy and money saving tips might be helpful and appreciated.
I would think focusing on those Congressional members who NEED focusing on, rather than those I know have been reached and are already on board might prevent a re-inventing of the wheel and save our limited and very valuable energy.
And trying to collect a sum of $17,000.00 in less than 3 weeks from Lyme patients.. for any reason much less to buy Congressional members something they may not even look at, for the many reasons outlined in detail above...
Well, I just thought there might be other ways to use the donations that would be more productive.
I know to me, $17,000.00 is a LOT of money. Actually that is more than I make in two years.. so it is shocking to see that figure being asked for, especially at the end of a session and when so many other things are in progress.
So, I was thinking maybe this effort could be modified to get the most bang from the bucks that folks do donate.
I am also concerned about what will be done with the money if only $10,000.00 is raised (for example). What happens to the stated goals then?
Who decides who gets a movie, who doesn't? Same with the books?
If someone from Alabama donates $100.00.. will their representative get a movie or book if the entire $17,000.00 isn't raised?
Will the movie/book go to someone like Pallone instead (for example), who we know it won't phase.. and will Alabama be left out because the total amount collected was short of the goal?
OR... will everyone who donated get their money back if the total amount needed isn't reached? Or will the plan be scaled down to fit the budget... and if so, how?
I was trying to suggest modifications (budgeting, if you will) and get some answers so this kind of stuff wouldn't detract from the effort.
Anytime someone in the Lyme community (or anywhere else) asks for money for whatever the project... stumbling blocks will be tossed in the way. The quickest way to damage any effort and a person or group's reputation is to not have a well thought out and detailed plan in place... especially when money is involved.
Since this is an unusual request being made... many will have concerns.
Example- I have never seen a request to have patients pay for Lyme related information and literature that will be given away to those who actually HAVE money to get what they need or want... and who may want nothing to do with what they are given.
My suggestions were aimed at addressing these and other concerns that will pop up... and that WILL be a problem if a good plan isn't in place.
posted
TC, I found lymenet at 4:30 am about 4 years ago and am thankful every day for it and for YOU. I admire your activism, your perserverence and you humor. You are a real pioneer in this movement, and I value your imput on this project. I really hadn't thought about the "gift ceiling", though I'm sure someone has. My husband, who was a federal employee, thinks we are well below it. Also, these can be defined as educational materials.
I did give Congressman Wolf the book prior to the forum he hosted. He promised to read it, but I don't know whether he did. My request was that he or someone working with healthcare on his staff read it. Just yesterday, I received a note from his aide that she is halfway through it. We have talked about our expectations of this piece. We realize that most of the congressmen may not read it themselves. But hopefully, a staff member will, and then brief their boss. But what we hope will have a direct and immediate impact on them will be the personal messages from their constiuents given them with the book and DVD!
Also, we are not relying solely on individual donations for this. We are seeking sponsorships as well. For me, personally, the constiuent messages are more important than the money collected.
You are right about Senator Warner retiring; and we have considered our timing. We plan to follow up this initial step with further communication after the election. TC, I think this is just another block in the foundation already laid by you and others. There are many more blocks to go; and with the momentum rising, it is going to take a lot of people-power to stay with it. You are right. We do need to work together, build on each other's knowledge and resources.....and one day, when the cure is found, celebrate together!
Please continue to share your expertise!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Don't you think we are taking advantage of the perfect storm: Pam's book, Andy's movie, and Blumenthal's antitrust settlement.
And Tincup, I understand what you are saying: So many have fought, planned and worked tirelessly for years. They have helped bring us to this perfect storm moment.
I know this may be an idealistic idea, but I believe Pam and Andy's voice can make the difference at this moment/time.
When I first read Dr. Burrascano's congressional testimony years ago, I was so moved to know that someone was my family's champion. I want the many champions that we have now to be on record.
I think this idea is an idea that the entire community can get behind.
I don't think it ruins the chances for legislation, or fights that effort. Instead it uses the perfect storm to give our federally elected men and women the powerful voices of Pam and Andy.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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I have worked on many fund raisers over the years and also have done many educational events.
I know many people here have done various fund raisers and have tried to educate people about certain issues. Everyone has a different approach to tackling a problem.
A large percentage of the population out there can't take the time (or don't want to) to educate themselves. We here on lymenet have HAD to educate ourselves about lyme disease and the co-infections because we are in the middle of it.
In my experience, education is the biggest key to accomplishing the goal we want. Sure the congress can afford to buy the dvds and books but are they going to?
Probably not unless they are touched personally by this disease. Question, how many of us even knew about lyme disease before we were educated about it? Someone somewhere invested their time and money to get the word out to everyone here.
I sure hope this thread doesn't turn into a debate on whether or not the NatCapLyme is making the right approach. As I see it they have made huge steps in getting congress to listen.
With the materials being sent out to congress and others, even if only half of them actually read it or watch it, that in itself is a milestone.
Our government is the bigger issue right now. If all our political reps. are educated on the severity of this illness then maybe this will be a help to Dr. Jones and all the other LLMDs who have gave their best efforts to help people.
The attack on the Lyme disease issue needs to be delt with on all fronts, education, public testimony, scientific research and so on.
This group should get a huge thank you from all of us on their efforts, whether or not it turns out succesful.
Again, just my 2 cents, not a debate
proudmom Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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posted
Just received an e-mail from NatCapLyme that Gregg Skall will be on the national Sue Vogan internet radio show this Monday 6pm western and 9pm eastern time and will be explaining this briefing, it's relevance and why it is important to do it at this time. They have two attorneys on their board in Washington that have Hill experience and know what they are doing.
This is all the info I have, if anyone has anything further please post it, as I am leaving on a much needed vacation in about an hour, and won't have internet access till mid next week. Hopefully the show will be archived so I can listen to it when I return.
I think this is exactly what we need right now, we have a wonderful opportunity in this book and movie, and we need to capitalize on it. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
What I put together and sent to my email database of friends, family etc!
quote: Hey guys!
I know that this issue seems far from many and may be close to others. I urge you not to delete this but take a few moments for me - a friend, a colleague, a parent, a neighbor, a patient....
A quick reminder - the CDC states that the real numbers of Lyme Disease annually is estimated around 200,000 nationwide - with these numbers it is only a matter of time that someone close to you,
a family member or even yourself can be affected by this disease. From personal experience it is no where near a cake walk and I wouldn't wish this on my worst enemy!
For many it seems it is easily cured but for many others it is not and it is believed that timing of catching the infection could be the key issue.
We have an historic opportunity to brief Congress on Lyme disease. With the help of Senators Dodd and Lieberman, we have a luncheon briefing scheduled in the Senate Russell Office Building on September 24.
All members of Congress are invited. Speakers will feature Andy Wilson, director of Under Our Skin, and Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic. Clips from Under Our Skin will be shown.
Why it's important
It has been over fifteen years since the US Congress has investigated Lyme disease, its diagnosis, treatment, and the issues surrounding its late-stage form. Every two years a new congress is formed.
Lyme disease bills have been introduced repeatedly, but none have passed. We wish to raise awareness and request a new congressional hearing so that our legislators can facilitate unbiased research.
To quote Pam Weintraub in Cure Unknown, ``...if we are ever to unravel the mysteries of Lyme disease and find a cure, it is science�pure and unadulterated�that will lead us home.''
The release of the documentary film Under and Skin the book Cure Unknown present the Lyme community with an unprecedented opportunity to
educate our federal elected officials about the disease and the incredible toll it takes in human suffering.
Let's all work together toward this important goal that will benefit everyone affected by Lyme and Tick-Borne disease.
Find your members at www.congress.org by zip code, or click below. Telephone, email, write a letter, or best of all, schedule to meet with them in person in their home district office while they are home on recess in August
Ask them to attend the briefing. If they cannot attend, request they send their senior staff. Congressmen are the most responsive to requests from their own constituents.
Your voice is vital to success!
DONATE
Sponsors are needed to provide the book Cure Unknown and the full length DVD of Under Our Skin to all 535 members of Congress. You can even include a personal note to your own congressman! Make a tax-deductible donation and submit your personal message at www.NatCapLyme.org/contribute .
Or, you can send your donation and note to NatCapLyme by mail to P.O. Box 8211 , McLean , VA 22106-8211.
It will cost $17,000 to provide copies to all members of Congress. We need donations by Aug. 30 to have the DVDs and books in time.
NO DONATION IS TOO SMALL!
With the rate of risks increasing every year due to migration factors of wildlife and expansion into forested areas, our area is now becoming highly speculative for serious outbreaks.
The State Health Department began this year with funding from the Wildlife Society, tracking and testing for the increase of the disease in our state.
Many states that are commonly believed not to have Lyme and Tick Bourne Illness threats are also beginning the same type of research funded by the Wildlife Society.
The truth is that migratory factors of birds and wildlife are creating the outstretch of this disease from the northeast into other states.
VA, NC, SC, KY, TN, IN, WI, MN, IL, CA, FL, GA, IA, Al- all these states, and more, are now being monitored for the spread inspite the fact that the medical community is still insisting that we don't have it here or that the threat is minimal.
I personally know individuals in most all states that have been diagnosed with chronic Lyme and most have vector Bourne confections.
Additionally, in the past few months a virulent strain of the bacteria that causes Lyme has been evidenced in the US and Europe.
If you doubt this information, instead of asking a doctor or medical professional in the low risk areas, ask a veterinarian the local risks for animals. The vet field seems much more on top of this situation than our own medical field. And ask yourself -
If the animals around us are becoming infected then how can anyone, whether they have the letters MD behind their name or not, state that humans are not!?!?
It is gaining attention thanks to individuals noted above like Pam Weintraub, a scientific journalist that writes for Discovery Magazine,
who unfortunately acquired Lyme as well as confections as did her entire family - her husband and three children who wrote Cure Unknown: The Lyme Epidemic.
And the newly released Under Our Skin movie that you may have read about in our local paper and should see soon on PBS and other stations as it has gained great attention at the movie festivals since its release a few months ago.
As more and more individuals with some clout in this world come down with the disease it is gaining attention and, thankfully, a harder look.
Additionally, the Attorney General of CT and Infectious Disease Society of America reached an agreement with the antitrust settlement and there is currently a new panel being created to determine the proper treatment guidelines for this disease.
Currently the treatment guidelines are biased as evidenced by the antitrust issues brought against the IDSA. Therefore it is difficult to get treatment and then if one does receive it as needed, insurance will not reimburse. It is a catch 22.
This is in the best interest of everyone around you - young or old. We need this briefing to go off like fireworks to make the research funds available for this disease and for the changes that are needed! Without political push and pull this will never happen! Which means that without you, I don't think it will happen either.
This is a proactive response by many and in advance, I appreciate your willingness to help - no matter how small! $5.00 is the minimum and more than appreciated!
So I am calling out for some action and pleading with each of you to help!! In spite of our enormous medical bills here at home we did make a donation as well.
Please feel free to pass on to anyone you can think that might be willing to help as well. Your contribution should also be tax deductible.
I encourage you to read the book Cure Unknown and educate yourself about the fastest, highest rate infectious disease in the U.S.
it is not to scare nor isolate but to educate and protect. (remember I am still camping and fishing!!!)
Knowledge is Power!
Warm regards,
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I have heard from many who are putting together letters like yours, cjnelson, to send to friends and family.
Something good is happening. The moms' of teens with lunch support group I am in began with 4 of us (30 months ago) from lymenet who contacted one another and it has grown to over 40 - just here in our northern Virginia suburbs.
Each one of us knows someone else we could bring to lunch.
Each one of us supports the other - lifts the other from despair and fear.
This briefing/effort may be a catalyst to cause a review of the science. I want that, don't you.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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quote: This briefing/effort may be a catalyst to cause a review of the science. I want that, don't you.
That is what I am hoping the long term efforts will be. I believe the synergistic effects of all that is happening is the road map to change
as long as we dont give up or give in! The ingredients are all right there for it to happen we just need to mix it up the right way.
I dont think that panic antics are the way to go. I dont think that extremes (and I mean the extremes of the disease) are the best approach either.
It is the average of us - the death of quality in life - that drags us down. We are more the norm. Those of us that "look good" but feel like our bodies are going through some type of internal pin ball machine game with noone at the helm.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
cj, do you care if I copy your idea? I'm already planning to send the dvd to my family to pass along and I am not very wordy at this point. I thought that if I print yours off and include it with the dvd that may help.
I have family in Calif, nevada, oregon, and kansas so I hope that each of them will tell their friends.
Proudmom Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
If you want to hear an explanation of the Capitol Hill event google the Sue Vogan show from this evening.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
^ Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My friend of 3 years - lymeout - wrote this on jenieeeeee's thread in activism and I thought I would copy and add for those who are reading about this:
Robyn, If you get a chance, go to NatCapLyme.org and click on the Sue Vogan interview with Gregg Skall. Gregg discusses the purpose of the visit and the status of the bill.
As far as we know now, the bills are off the table. But Nat Cap's goal with this briefing is to ask for a hearing, and then a record of testimony- human impact, research, medical community response, etc - would be recorded.
Our congressional record has not been updated since 1993! Hopefully, an updated record will lead to either the resurrection of the bill or tailoring of a new one.
It has been Gregg's experience that having a record such as this is a tremendous help in the legislative process.
He also explains the timing of the hearing - which is just before recess. Pam's book and Andy's film are two of the most powerful educational tools we have at this time. We want to put them in our legislators' hands - hopefully filled with messages from their constiuents-putting lyme disease at the forefront in their minds as they go home, where they will meet some of these people face to face.
Do I sound like a West Wing rerun? As a baby boomer, I have not lost all of my idealism. I know that our government deals in many shades of gray (and black); but I do believe that sometimes they DO the right thing, because it IS the right thing!
We knew that Rep. Wolf was already a sponsor of the lyme bill when my daughter and others visited him. But what resulted from that meeting was a legislator who was committed to doing more than just signing his name on a bill.
He is now actively committed to doing everything in his power to sort out the lyme mess and clear the way to better prevention, diagnosis and treatment for his constituents.
I would like to clarify the book/dvd donation thing. Initially, the goal was to put these materials into the hands of the health committee members, funded by our organization and sponsors.
The thought of extending to every member of Congress was a spontaneous inspiration - a potentially powerful way of connecting suffering individuals across the nation to their lawmakers.
It is not a goal that MUST be met fully. We will be sure, though, that books/dvds get to every legislator for whom we receive a message and donation.
Therefore, every legislator may not get one. That's okay! Maybe the lucky ones will share with their colleagues! (I'm not THAT naive!)
I would never want anyone to donate to this, or any other project, if it causes financial discomfort or if they don't believe in it. I have had to choose from the many projects over these past 5 years, where to give of my time and money.
When the CALLS TO ACTION come, I have not been able to travel to give physical support because my daughter needs me at home. But I have made the requested phone calls.
My husband and I have donated to LDA and Nat Cap as a part of our Christmas giving (in our children's honor). But there are other financial requests that I have had to choose not to participate in. I know my reasons and am at peace with them.
I would hope that no one feels obligated to participate in this project in any way if they are not comfortable with it! We are a tapped-out community! No one of us can do everything. So we pick and choose.
I chose to support this project because it is in my backyard! I think that is what each of us does daily - the best we can in our circumstances.
These observations, thoughts, opinions are my own and do not necessarily reflect those of any other organization or person.
[ 12. August 2008, 07:51 PM: Message edited by: valymemom ]
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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bettyg
Unregistered
posted
val,
please break up your entire last post you posted of someone else ....we neuro lyme folks CAN'T READ at all....
click pencil to right of your name and break it up into 1-2 sentences PER paragraph and TRIPLE space between paragraphs for us; thanks my friend! xox
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posted
Just spent some time listening to the archived interview with Gregg Skall explaining the details of this on the Sue Vogan show - definitely listen to it if you have any questions, they have definitely thought this thing through. http://www.contacttalkradio.com/hosts/suevogan.htm
There will be a follow up interview on the progress on the 25th as well.
This is good, really good! -karen
Posts: 205 | From northern california | Registered: Apr 2008
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bettyg
Unregistered
posted
valymemom, HUGE THANKS for breaking that all up so we could read it all!!!
karen, i look forward to listening to it tomorrow; needed to see dr. and get my car back with a problem no one has happened to them but ME!
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posted
I have my letters written, will mail two and hand deliver the other. Will send a donation.
However, I have to agree with tincup that doing a briefing just before an election that will change the players might not be the best timing. What difference would it make to wait a couple of months when the new Congress is in session? The book and film will still be current and available for use. And if it is a hearing we want, it would not take place until the new Congress convenes, right?
Could someone explain this timing please?
Posts: 8430 | From Not available | Registered: Oct 2000
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My thoughts on it all are that there will probably not be a very large number of congresspeople who won't be coming back, most incumbents generally are able to win re-election anyways, so it will be a much smaller number that need to be educated about this later on.
Also, people in politics generally stay in politics, they just move around to other positions when their term limits are up, so if we are educating someone who is leaving office, and then ends up running for a different office after, that is a good thing they were educated, right?
And if all the congresspeople are given the book and the film before recess, they might actually have the time to watch the movie, and read the book, as well as talk to constituents who have been affected by lyme back home. They will be going home with the lyme situation at the forefront of their minds, and hopefully that will spur them to look into it while they have more time to do so.
It all sounds good to me, but definitely listen to that broadcast, they explain it all very well. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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posted
Unfortunately, listening to these broadcasts via dial up internet is nearly impossible. You get a sentence or two and then five minutes of buffering or whatever. Could someone just briefly outline what was said about the timing? Thanks.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Unfortunately my lyme brain is really bad right now, so I am not able to really get the gist of it across, but hopefully valymemom or someone else who listened will be able to do this for you.
Dial-up - ouch! I don't envy you that -k
Posts: 205 | From northern california | Registered: Apr 2008
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posted
Timing of the briefing - Karen, you are right. The advice received from Hill aides was that the turnover percentage is typically small, and that aides tend to stay on to ease transition. It is the aides who will be doing most of the work, including briefing new legislator, anyway.
Also, the advice was to take advantage of the slowdown in activity just before recess - good time to get attention. They will be bombarded in Jan/Feb.
There will be followup steps, again as advised, once they settle in. There will be visitation teams, etc. The hope was to have them go home after this briefing and actually see affected constiuents' faces,so that they realize the scope and reality of this illness.
I think this will be an ongoing process - one in which we can hopefully establish and build relationships. It just seemed the right thing to do, given that many of us are just metro stops away and can chip away at it over time.
As for Gregg's interview. Most of the info covered is pretty much laid out in these posts. He may be on Sue Vogan's show two more times to provide updates. I think you can send in questions.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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