Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
LymeNet has always supported Lyme Disease Awareness Month and has encouraged all of us to be active in making others aware.
This year, to lessen the number of floating posts, to not drive the moderators off the cliff, and to make it easier for all of us to find things, please post your May Awareness Month ideas and projects here!
A national campaign and some very interesting projects are about to be announced, so please check back often.
Tincup
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Member # 5829
posted
Could use some help keeping this post up, at least on the first page here during the month of May. I'm still swamped with Lyme related projects!
posted
There's still time for any of us to contact any organizations with websites and ask if they want to post an awareness alert for May on their site. Can be for gardening or pets or outdoor sports or...whatever your fancy, in reaching out.
Also, sometimes store chains will send out alerts to their branches to post on their boards. It's not May yet, so hey, call a few and see if they'll take a simple alert sheet from you with a couple basic facts and contact info.
I have done the above already, plus get articles into May newspapers and newsletters.
Also, if you have local councils, etc, you can testify during May meetings.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
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posted
Thanks Robin3957362! Good ideas!
Here is a news release talking about Ravens football players and news anchors, celebrities, etc that will be singing at an event to raise money for Lyme-Aid-4-Kids and Lyme research.
BALTIMORE�S GOT TALENT (AND A GREAT CAUSE) STARS HIT THE RIGHT NOTE IN FIGHT AGAINST LYME DISEASE
Cure-eoke to Raise Funds for Research on Epidemic Illness (Baltimore, MD)� Move over American Idol. Step aside X-Factor. �Cure-eoke� is about to take the stage. Local TV & radio personalities, politicians and sports stars will �sing� karaoke to raise money for research, education and awareness for Lyme disease.
Some of the biggest names in Baltimore are slated to take the stage. While they may be slightly off-key, they�re going to be right on the money when it comes to helping a vital cause: Lyme disease.
Just some of the talent slated to perform:
� Mary Beth Marsden: host of WBAL Radio�s Maryland�s News Now � LaQuan Williams: Baltimore Ravens � Damien Berry: Baltimore Ravens � Jamie Costello: ABC-2 News Anchor � Mike Schuh: WJZ-TV News Reporter � Kirk McEwen: Baltimore/DC Radio Veteran (Formerly of 98 Rock, 105.7 FM, 105.9 FM & DC101) � Mike Lookingland: Baltimore Blast � Maryland State Senator Jim Brochin
While they may be slightly off-key, they�re going to be right on the money when it comes to helping a vital cause: Lyme disease. The tick-borne disease, which has reached epidemic levels in Maryland, is often misunderstood and underestimated because it�s extremely difficult to both diagnose and treat.
According to a disease ecologist at Cary Institute for Ecosystem Studies, �We expect 2012 to be the worst year for Lyme disease risk ever.� Scientific research is needed for better testing and treatment. Studies have shown that more than half of the current testing results are inaccurate.
Many patients remain seriously ill even after a course of treatment with antibiotics. Spring for Lyme will be held: Friday, May 11, 2012 from 7-10 pm at Timonium Crowne Plaza, 2004 Greenspring Drive Timonium, Md 21093.
Local celebrities, doing what they probably don�t do best, will provide the entertainment as they sing their favorite songs. There will also be appearances from long-time survivors of Lyme disease and doctors who have been on the front lines, trying to keep ahead of the epidemic. Food, drink and a silent auction round out the festivities.
The event kicks off Lyme Disease Awareness Month in Maryland, one of the top ten most affected states. Tickets to Spring for Lyme are $75 per person.
Tincup
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posted
A nice part of the above event ...
It indicates the media- a big selection- and legislators are supporting us. Years ago you couldn't pay them to talk about Lyme, not to mention chronic Lyme!
Nice to see they are now contributing to our efforts, especially to help the kids by way of the LDA's Lyme-Aid-4 Kids program and with Lyme research too!
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tincup
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Happy to see YOU happy, gatorade!
I keep getting asked questions about this, so have put together these two lists.
Handout Literature to Order or Print- Free or Low Cost
An amazing ped. LLMD has agreed to have a time of question and answer following the movie. (Guess who...I am sooo excited!)
Our goal is to fill 450 seats and raise awareness (including drawing media) in our community. We also plan to have a petition signing in favor of passing the PA Senate Lyme Disease Bill. (Can you believe they've been hemming and hawing and ultimately turning their backs on this bill for 10 years now? Disgraceful! Shame on them!)
My personal goal is to fill as many of those seats as possible with doctors and legislators. Maybe watching UOS will help them to "get it."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Yes, 17hens, it's fine to accept a June or summer announcement if we missed the May deadline. It just gets a new headline - summer fun is here, protect yourself, or whatever you want it to say.
The first time I ever testified, I said oh shucks, I had missed May by 6 days but I still wanted to testify for the May awareness month. I think people laughed.
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Tincup
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posted
TWO programs presented by the SE Pennsylvania Lyme Disease Association.
May 12, 2012 1:00 PM Saturday - Special Public Event � free and open to the public, sponsored by LDASEPA with nationally recognized physician and expert on the diagnosis and treatment of Lyme disease and other tick-borne diseases, Elizabeth Maloney, MD
Location: Garnet Valley Middle School, 601 Smithbridge Road, Glen Mills, PA 19342
Dr. Betty Maloney is the medical advisor for Minnesota Lyme Action Support Group. In that role, her goal is to provide accurate scientific information regarding tick-borne diseases to the medical community and the lay public.
Dr Maloney has been actively speaking to groups around the country. We are very excited about having her come to speak in SE PA.
```````````````````````````````````````````` LYME DISEASE AWARENESS WALK
May 19, 2012 10:00 AM - Saturday Elwood L. Crossan Park, Landenberg, PA
Street address: 91 Parsons Road, Landenberg, PA 19350
May 19, 2012 10:00 AM Saturday - Join us and others interested in supporting our efforts to support, educate and inform the public and people suffering from Lyme disease and other tick-borne illnesses.
You can now register online or by mail and donate on-line or at the walk. Pets are welcome.
This is a walk at your own pace and your own distance event located in a beautiful country setting.
Register now, before May 1, and get the tee shirt.
Tincup
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Member # 5829
posted
An Anniversary We Won't Forget!
On May 1, 2008 the Attorney General of Connecticut (Richard Blumenthal) released his findings after a lengthy investigation of the Infectious Disease Society of America (IDSA) guideline development process. In part he found...
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
The IDSA guidelines, which should have been destroyed for that reason alone, are still on the market today causing destruction to countless people's lives.
PLEASE get everyone you know to sign the petition to get the guidelines taken off the market before they do any more damage!
Tincup
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posted
Bug Repellent Sale- Good Stuff at a Good Price!
For years I've used and recommended Avon Bug Repellents for the simple reason they work well, and Avon sells non-scented products that hunters, farmers and other outdoors people will use more so than the oily, smelly kinds on the market.
The Avon repellent products have been listed on the "Prevention" page on the Maryland/Virginia/Florida etc. websites since day one. The lady who wrote the note below, Colleen, is offering them for discount prices (looks like about 1/2 price?) for a limited time.
Colleen, as you may know, is THE go to person for our military men and women who have Lyme disease. Along with many others I support and appreciate her volunteer work.
Certainly buy your products from whomever you choose, including the Lemon Eucalyptus product she mentions, but in this area I've had a hard time finding and keeping an Avon representative, so this will certainly help me, and maybe others?
``````````````````````````````````````
Hi Everyone!
Effective April 30th through May 12th select Avon Bug Guard Products will be available at MY COST! This is a great time to stock up! Be sure to select #687878 Bug Guard Plus IR3535 Expedition spf 30 Pump Spray, OR #315540 Bug Guard Plus Picaridin Pump Spray to qualify for the 20% discount.
If, for some reason, the discount isn't applied by the web site, don't worry! I will gladly send you a refund in the mail ASAP!
PLEASE NOTE: After May 12th I will no longer be selling Avon because we will be going to the Middle East via the Air Force for two years. But, don't worry! I have a friend who can take care of all your Avon needs!
Last, but not least, I have become a Consultant for Lemongrass Spa Products because, as a Lyme Patient, I found a need to use all-natural, non-hormone disrupting bath and beauty products.
They offer an effective, natural-based bug repellent called "Bug-A-Boo" that contains "EPA approved" Lemon Eucalyptus! They also offer men and baby products so, if you'd like to check them out, my web site is:
Tincup
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Member # 5829
posted
Recipes for Repair: A Lyme Disease Cookbook, which is 20% off -- both on our web site and on Amazon -- now through May 7, Discount for May Awareness Month. More details here.
Tincup
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posted
YES! The Chronic Lyme Disease Billboard is now up and running in Times Square! You gotta see it! A HUGE billboard- the CBS station billboard in fact!
The 15 second "ad" runs every hour, 24/7 and will continue for at least 9 weeks!
BTW- Approximately 40 different media outlets picked up the chronic Lyme bill board news release and shared it in their publications and venues in the first 12 hours of it being announced.
Times Square has approximately 40 million visitors each year passing through.
posted
A "Dart for Art" event happened this spring, via the Lymelight Foundation in Atherton, CA - 90 artists donated works of art, and people "darted" for their favorite one and paid its listed price.
I heard they raised $75,000, to be given to young folks needing to get to a Lyme doctor!
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Tincup
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Dart for Art? That sounds like fun! And look how much was raised as a result! Amazing!
Here is another program that sounds like a good time!
The 3rd annual Lyme Light Fashion Show is THIS Saturday, May 5th at Montgomery County Community College in Blue Bell, PA and will feature 35 children and youth with Lyme Disease.
8 of these stories will be featured in video vignettes. Lyme Light's goal is to raise awareness of the impact these diseases are having on our youth and children, to focus on prevention and early recognition and treatment, and to raise funds that continue to support the educational and outreach work of MontCoLyme.
The event is being emceed by ABC/Channel 6's Niki Hawkins, and will have speakers Senator Stewart J. Greenleaf and Rep. Kate Harper addressing the Lyme Disease legislative efforts in the Senate and House.
MontCoLyme will be announcing the formation of PALyme, a state-wide non-profit, and will also be awarding the MontCoLyme Leadership Award in recognition of Leadership and Service in Lyme Disease.
Please join us on Saturday - the demand for Lyme Disease Awareness is overwhelming and your support is needed. Help us generate Media focus by bringing out a strong showing -- bring your friends and family!
A silent auction starting at 3pm includes an initial consult with Dr. Ann Corson, one of the top pediatric Lyme doctors in the world, to be scheduled WITHIN 3 MONTHS (her waiting list is currently 1 year)!!
Many other terrific auction items will be available as well.
Tincup
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posted
Dart for Art? That sounds like fun! And look how much was raised as a result! Amazing!
Here is another program that sounds like a good time!
The 3rd annual Lyme Light Fashion Show is THIS Saturday, May 5th at Montgomery County Community College in Blue Bell, PA and will feature 35 children and youth with Lyme Disease.
8 of these stories will be featured in video vignettes. Lyme Light's goal is to raise awareness of the impact these diseases are having on our youth and children, to focus on prevention and early recognition and treatment, and to raise funds that continue to support the educational and outreach work of MontCoLyme.
The event is being emceed by ABC/Channel 6's Niki Hawkins, and will have speakers Senator Stewart J. Greenleaf and Rep. Kate Harper addressing the Lyme Disease legislative efforts in the Senate and House.
MontCoLyme will be announcing the formation of PALyme, a state-wide non-profit, and will also be awarding the MontCoLyme Leadership Award in recognition of Leadership and Service in Lyme Disease.
Please join us on Saturday - the demand for Lyme Disease Awareness is overwhelming and your support is needed. Help us generate Media focus by bringing out a strong showing -- bring your friends and family!
A silent auction starting at 3pm includes an initial consult with Dr. Ann Corson, one of the top pediatric Lyme doctors in the world, to be scheduled WITHIN 3 MONTHS (her waiting list is currently 1 year)!!
Many other terrific auction items will be available as well.
posted
Just presented today at a meeting with a couple dozen folks who knew nothing about Lyme. Brought lots of brochures and papers.
There are campers in this group who know nothing about Lyme. Now they do!
Also emailed out a one-page info attachment to lots of folks - easy to do, and it's something that can be forwarded.
Up for more May LDA month reports!
[ 05-06-2012, 11:57 PM: Message edited by: Robin123 ]
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Tincup
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Yeeeeeeeeeeee haw! BEAUTIFUL YOU!!!
Got any pictures of the events? If not, please try to get one to represent what you did. Tomorrow the Photo Wall should be up and running so we can all see who is doing what and where.
Announcement to follow!
And little bird, thank you for your never-ending activism efforts on our behalf. You did a fantastic job educating people... and you educated campers.. can you believe that they didn't know? It is perfect!
posted
Hello friends on Lyme.net. Just a reminder that Spring for Lyme tickets are going fast and e event is on Friday. Lots of media, politicians, Ravens will be present . Www.springforlyme.org
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tincup
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Yes gatorade! Ticket sales will end on Thursday night at midnight, so get 'em while their hot! Over 400 tickets have been sold already!
I hear there have been lots of donations again this year for the silent auction too!
The $ donated from this event will be a BIG plus toward helping the children pay for Lyme-related tests, a visit to the doctor of their choice, etc. through the LymeAid 4 Kids fund.
So far the Lyme Disease Association's LymeAid 4 Kids program has distributed over $216,000 for our children get help they need! See the list here.
tiny.cc/akq1dw
Thank goodness for efforts like this one! Oh, and they also donate proceeds to Lyme disease research too! Very important!
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I'm looking for a good lyme awareness letter to send to my local newspaper, that I can change a little, as needed.
I want to stick to the facts, no opinions, and I want to cite persistence of infection despite antibiotics.
I also want to cite info about benefits vs risks of long term treatment because I know there will be some Dr(s) write in saying that there is no known benefit from long term Rx and it is too dangerous.
I could compose this whole thing myself, but I'm not sure I have the brain energy to do it....so I'm looking for one or more letters that already state the facts.
I will also cite the obvious websites: ILADS, lymedisease.org, lymediseaseassociation.org, lymepa.org, and I will mention "Under Our Skin" that can be viewed for free on hulu.
Thanks for any help in pointing me to any letters that I can use/modify.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Hi Tin Cup.....I spoke to someone today from Soring for Lyme and 525 tickets . Lots of politicians, drs, media are coming. I am really excited . Over 100 silent auction items too. Yippee!!! Hope to see ya'all there. Thanks for the May Awarenss news feed. It's awesome.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
The Spring for Lyme website indicates that they will still be selling tickets up until the event. It says that if you still want tickets to call 443-743-9006. Online ticket sales end at midnight ,but you can still call in. Www.springforlyme.org
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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17hens
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posted
Harrisburg Area Lyme will have a booth at the community college's Family Favorites Festival on June 2. Last year they had 8,000 families walk thru!
Question: How can that be, you may ask? To be 2 places at the same time? Answer: We ordered another Lyme Green Table cloth with our logo on it! We will do whatever it takes!! Go Team!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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17hens
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quote:Originally posted by Tincup: The 3rd annual Lyme Light Fashion Show is THIS Saturday, May 5th at Montgomery County Community College in Blue Bell, PA and will feature 35 children and youth with Lyme Disease.
Hey TC, got a nightmare story for you...
A friend of mine went to this fashion show and told me that the kids were backstage before the show, getting hair and make-up done, and a group of them finished early.
This group of kids were asked to go outside and tie lime green ribbons around some of the lamp posts along the sidewalk, which they did.
When they came back inside, someone noticed that they were covered in ticks! One of the girls had 12ish ticks on her arms and legs! They just stepped off the sidewalk into the grass to tie ribbons. Can you imagine? I would have been hysterical.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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WPinVA
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posted
Great thread, TF!
I spoke with my daughter's kindergarten teacher about Lyme and the risk to the kids because they just started a gardening project. She agreed to do a lesson for the class on Lyme prevention and she may even send something home for the parents!
She's going to encourage the kids to apply bug spray before they go out and she even said she'd do quick tick checks on their exposed skin when they come in.
I sent her some material (with the assistance of some on here). I didn't even know if was Lyme disease awareness month until I started digging.
I'm still pretty limited by my health but it feels good to do SOMETHING. I think I'm going to talk with the school nurse next.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Tincup
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Dekrator, good for you!
I've seen articles similar to what you want, but of course can't remember where. I do remember they were quite technical though, so what you find may be that way too?
You might check Lorraine Johnson's blog (Lymedisease.org- (formerly CALDA) for something of this nature?
Please keep in mind newspaper articles should generally be written at about a 5th grade level, so unless you are writing for scientists or medical professionals, you might want to bring it down to a level the paper will accept?
Wouldn't want you to work really hard on something that has a lesser chance of being published than a general basic article, but it is certainly up to you.
You said... "I also want to cite info about benefits vs risks of long term treatment..."
VERY difficult to find this info, not much out there. You might try Dr. Cam----'s website.
You can also go to LymeInfoto see their persistence files that may help you compose something.
Tincup
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Hey Gatorade! Great news!!!! Been sharing the info and reminding folks, so its good to know they are having a sizable crowd! Thanks for the feedback!
Have fun and don't party too hardy!
Hey 17 hens! WOW on that agenda! Good for you all!!! You are doing your share and more!!! Hope all goes well!
And YULK on that tick story! Ewuuuuuuuu!!!! NOT fair and NOT fun!!!
Now you got me itching! HA!
WP in Beautiful WV!
That is great! Teaching kids that young (and their teacher) will really help with awareness, so I'm thrilled to hear of your intervention! Be sure to take a picture of the school, playground, something, to put on the Photo Wall at Lymedisease.org
Show 'em your stuff!
If you need literature, here is a link that might help. You can print out some of the things yourself.
To note- the LDA just sent out the last of the ABC's on Lyme Disease brochures (geared toward children). Over 20,000 they'd just ordered went like wildfire, and all in small batches! Amazing, isn't it? And really great too!
Here is the link. Be sure to see the attached files at the bottom that can be printed out too.
Thank you so much, don't forget a picture and good luck with the nurse!
WPinVA
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Member # 33581
posted
Tincup - thanks for the encouragement! Would you mind reposting the link with the Lyme ABC's? For some reason, I couldn't see it and I would love to give that to the school.
thanks!
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17hens
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-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Dekrator48
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Thanks for the ideas Tincup!
Now I have to muster up the mental energy to put a letter together.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Sorry I missed this thread and originally posted thie elsewhere. The Kentuckiana Lyme Support Group (www.kentuckyindianalymesupport.org) hosted a screening of Under Our Skin last night at a local community center in Louisville.
Our group is only about 6 months old with 20 members. We had about 150 in attendance. One of our members designed t-shirts for sale, in addition to a raffle and donation.
We raised over $500 to use for future efforts. We're thinking of donning our lime green t-shirts and visiting farmer's markets on Saturday's and distributing brochures.
We're also trying to organize a meeting in our state capitol to include the top KY entomologists and state and local public health officials.
Entomologists confirm the growth of Black Leg tick populations in the state, but public health officials and local docs are clearly operating under a cloud of willfull ignorance.
-------------------- Condemnation without investigation is the height of ignorance. Posts: 30 | From Louisville, KY | Registered: Oct 2011
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I would like to thank our Lyme community for all your support! The Spring for Lyme event was successful thanks to all of you. I know we can come together and raise awareness, educate, and help raise funds to beat this hideous disease! Thanks again for your love and support. I could not survive without you all.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tincup
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Member # 5829
Tincup
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Member # 5829
posted
WHERE ARE THE PICTURES? Get 'er done!
May is STILL Lyme Disease Awareness Month, with one more week to go!
We encourage you, your family and friends to actively spread Lyme disease awareness in your local community.
For a list of ideas on what you can do please check the "May Awareness" page on the Maryland Lyme website. MANY of the projects only take a few minutes of your time and are free to do!
Tincup
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posted
BTW- I heard from many that the program in NY with Congressman Gibson and the Health Fair and Speaker Forum with Dr. B and Eva Sapi in CT went VERY well!
About 1,000 people showed up all together and the air was buzzing with the excitement!
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