Click on the link below to
participate in a survey out of
Edinboro University regarding
Experiences of Symptoms
and Diagnosis of LYME:
LYME DISEASE IN THE NEWS:
Please post reactions on NPRs page:
Senator Greenleaf talks about SB177, Lyme Disease, and future legislation for insurance.
As for the insurance provision, the veteran lawmaker said he would again
introduce a bill mandating insurance coverage for extended
treatment prescribed in the next session."
"I don’t give up,” Greenleaf said. I take it step by step.”
Thank your Legislators in the House and Senate!
Call the Governor's office and ask him to sign
STAY TUNED for news on the date the Governor will sign.
Hopefully MANY will attend!
(updated June 16 2014)
The Senate should concur on Senate Bill 177
very soon, possibly even this week!
Once this happens it will
go to the Governor for one last step –
ACTION STEPS FOR US ALL:
1) Send thank you notes to the House Representatives -
your own representative, as well as Representative DiGirolamo and Representative. Baker.
2) Contact YOUR SENATOR via notes and/or calls. Ask him/her to concur SB 177.
3) Write letters/emails to the Governor asking him to sign the SB 177.
FIND YOUR LEGISLATORS CONTACT INFO HERE: http://www.pasen.gov/
This Wed. 6/4/14, the House, Human Services Committee, unanimously passed a revised version of Senate Bill 177 (Senator Greenleaf main sponsor). CALL YOUR HOUSE REPRESENTATIVES AND TELL THEM THIS IS A CRITICAL 1ST STEP FORWARD AND TO SUPPORT IT -
ALSO LET THEM KNOW - IT IS NOT ENOUGH - THAT ACCESS TO TREATMENT THROUGH INSURANCE COVERAGE MUST BE ADDRESSED GOING FORWARD. This bill is an important FIRST step in legislation to address the critical gaps in addressing tickborne diseases in PA. It will IMMEDIATELY require communication of recent tick surveillance research findings of Babesiosis, Bartoneillosis, Borrelia myamotoi, and other diseases found in the ticks in PA.
This is critical - myamotoi is a newly recognized strain of Lyme disease which affects the nervous system very quickly and seriously. The bill will also engage schools in prevention, and protection - AND add chronic tickborne diseases as a covered condition for student learning accommodations -- so critically important. Lastly - the task force is ordered to convene and finish quickly to generate a prevention program by PA, and an education program that must be broad spectrum covering multiple views - including the huge body of research demonstrating persistence of Lyme. THIS IS A HUGE FIRST STEP FORWARD.
All of us hoped that insurance would be part of this first bill -- however, we need to deal with the realities that exist, and get something done NOW. I don't know about you, but I don't see any park anywhere warning about ticks -- this bill will change that. And instead of having to hire a lawyer to ensure that my kids get the time they need to test because their memory and processing speed was so impaired by Lyme, students will have a specifically covered condition.
This bill is not perfect but it will make a difference NOW - AND LymeActionPA will keep fighting -- we have a commitment to move quickly onto the NEXT bill to address the next gap - Patient's Access to Treatment/Insurance. In the meantime, there are happenings that will give us firm support for this bill going forward.
CONTACT YOUR REPRESENTATIVES NOW!!! - Thank you for using your VOICE for change -
Julia Wagner, Chair, LymeActionPA
SB 177 PASSED a SECOND CONSIDERATION VOTE!
WHAT YOU CAN DO: KEEP CALLING YOUR REPRESENTATIVES and SENATORS!!!
TELL THEM TO VOTE YES ON SB 177
AFTER IT PASSES THERE IT WILL GO TO THE SENATE.
Call GOVERNOR CORBETT, TOO.
TELL HIM WE NEED SB 177
View Conversations LIVE! on WPSU, recorded Thursday March 24, 2014
WPSU's Patty Satalia interviewed
founder and the leader of Lyme Action PA, PALRN, and Montco Lyme Julia Wagner,
Director of the Northeast Wildlife DNA Laboratory and a professor of biological sciences at East Stroudsburg University, Jane Huffman PhD,
and a strong advocate and strong supporter of our efforts in PA Dr. Daniel Cameron.
Hear them discuss:
Status of the Controversy over Chronic Lyme
Was a huge success!
Distinguished Speakers Included:
Dr. Joseph Burrascano Jr.
It is with great sadness that I pass this news along. Rep. Dick Hess died Friday, 9/6 after complications from recent leg surgery.
As you all know, Rep. Hess has been a very strong and passionate advocate for the Tickborne disease cause, motivated by a close family member's very serious case. He was holding strong to advocate for insurance coverage for patients, and we are in the middle of reviewing that revised legislation that would have be introduced later in September.
See below for information about Rep. Hess's funeral, and address to send condolences. He was a tremendous advocate for our community and cause and I encourage you to send a personal condolence to his office to pass on to his family.
Thank you all - Julia
This is the address –
Representative Dick L. Hess
133 S Richard St
Bedford PA 15522-1343
This is the link to the funeral home obituary. You would also be able to send condolences online as well.
Please SHARE these stories to
raise awareness about the real life implications of
LYME and TBDs!
Thank you to Doug and Linda for sharing your stories to help others!
Borrelia Culture from Advanced Labs published in peer reviewed journal! read article: http://www.medsci.org/v10p0362.htm
Sapi E, Pabbati N, Datar A, Davies EM, Rattelle A, Kuo BA. Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum. Int J Med Sci2013; 10(4):362-376. doi:10.7150/ijms.5698. Available from http://www.medsci.org/v10p0362.htm
LYME ACTION PA
is proud to share
LYME YOUTH ACTION VIDEOS- 2012!
Senator Greenleaf and Representative Harper
Speaking in Support of Lyme Disease Legislation in PA
Please view, and PLEASE SHARE!
House Subcommittee met on LYME Disease 7/17/12
The following link provides a full summary of the hearing, a link to the video archive,
and a call to action! Please read and act now.
Let's make 2012 the year things change for the better!
Lyme Light Fashion Show Was a Huge Success! More to Come!
View Lyme Light Fashion Show 2011~ CLICK HERE!
URGENT ACTION NEEDED!
PA House Bill #272 was laid on the table in the house this week and will be brought out for a vote soon (most likely March). This is the time to CALL YOUR HOUSE REPRESENTATIVE, and follow-up with a SHORT personalized email.
House Bill 272 has made that trip to the HOUSE FLOOR!
Vote Expected in
CALL YOUR PA STATE REPRESENTATIVES
TELL THEM TO
VOTE YES on House Bill 272!!!
CLICK HERE to see the page on HB 272, and
to Find your State Representative!
This bill has included in it 2 very important parts: SEE CURRENT LANGUAGE OF BILL at http://e-lobbyist.com/gaits/view/245528
We NEED A VERY STRONG VOTE IN THE HOUSE TO SHAKE UP THE SENATE.
1) call your representative and tell them this is the time - VOTE YES.
FIND YOUR REPRESENTATIVE HERE:
TEMPLATE EMAIL CLICK HERE -- please make this YOUR OWN email -- representatives are much more responsive to personal emails - not so much to "form" letters. Tell your story and ASK them to vote YES. Don't give up until you get an answer from them.
2) call and email The Speaker of the House (he is the one who will decide when to bring it out for a vote: Rep. Sam Smith from Punxsutawney, Telephone: (814) 938-4225, E-mail: firstname.lastname@example.org
3) Post on LymeActionPA's Facebook page: we want to hear from you when you contact them- tell us all how it goes, what their answer is. Demand a response - they represent you! http://www.facebook.com/pages/Lyme-Action-PA/397803743661.
THANK YOU! WHEN THIS IS PASSED - IT GOES TO THE SENATE - THE STRONGER THE HOUSE VOTE THE MORE PRESSURE ON THE SENATE! TOGETHER LET'S GET THIS PASSED!!!!
UNDER OUR SKIN will be showing at the MAJESTIC in GETTYSBURG PA, May 14. Click Here.
REMOVE OUTDATED IDSA GUIDELINES FROM NGC!
Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.
IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC
recently permitted them to continue listing the guidelines – without updating
them – based on the IDSA’s claim that the antitrust review process fulfilled NGC
BACKGROUND: LYME POLICYWONK: http://www.lymedisease.org/news/lymepolicywonk/898.html
Please sign onto the petition at the link below:http://www.lymedisease.org/petitionscript/index.php
Join us in asking PA Congressmen and Congresswomen to join their fellow Congressmen Wolf, Gibson, and Smith in calling on the NGC (National Guidelines Clearing House) to remove the out of date IDSA Guidelines!
On January 17, 2012, Congressmen Smith, Wolf, and Gibson called on the National Guidelines Clearinghouse (NGC) to remove the IDSA’s outdated Lyme guidelines. We applaud them! But, this, of course, is the middle of the story not the beginning, so let’s go back. read full story at http://www.lymedisease.org/news/lymepolicywonk/898.html
A sample letter: Thank you for your service to the commonwealth. I am writing to ask you to join your fellow congressmen Smith, Wolf, and Gibson and call on the NGC (National Guidelines Clearing House) to remove the outdated IDSA guidelines for Lyme Disease. Lyme Disease is a growing problem in our state, and the IDSA guidelines are not up to date and are therefore grossly inaccurate. For Background on WHY this is so important please read: http://www.lymedisease.org/news/lymepolicywonk/898.html Thank you giving this the attention it deserves.
Tutoring Scholarship Available for
Children and Youth with Lyme!
is pleased to announce a new scholarship fund for
Lyme kids in PA:
"The Alan B. Miller Lyme Scholarships":
These scholarships have been funded through generous donations to the Green Valley Academy by Dr. Alan B. Miller initially funding 5 scholarships. 3 of these have already been allocated to children with Lyme, and 2 remain. But don't despair, the fund will be renewed if there is a demonstrated need. So get your applications in, and pass on this email.
CLICK HERE for the application. It is short and simple - there are no financial need requirements. The goal is to help kids with Lyme, period. Green Valley Academy (http://www.greenvalleyacademy.org/) is located in Paoli and has a Day Program as well as tutoring services for children with health or other special learning needs.
Please let me know ASAP if you are interested in a scholarship for your child and get your application in. The application is attached, along with an information sheet.
We thank the Founder and Director of the school, Mimi Green, who has had Lyme disease, and Dr. Alan B. Miller for their generous contribution and commitment to help kids with Lyme Disease.
I look forward to hearing back from you as soon as possible,
Julia Wagner, MBA
President of MontCoLyme (Montgomery County (PA) Lyme Information and Support Group)MontCoLyme@aol.com
MontCoLyme - 211 Main Street, North Wales, PA 19454
888-661-LYME (888-661-5963) (x102, Julia)
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program
to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need.
For more information and to learn how to apply visit their website: http://www.lymetap.com/
The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron. The all-type animation focuses on the statistical fact that Lyme disease is growing faster than AIDS and sends viewers to the ILADS.ORG website for more information. View the complete message at: http://www.ilads.org/media/ilads_jumbotron.php
Additionally below are links to webcasts from the ILADS conference held in Toronto in FALL 2010.
Of Special Note: Dr. Marcus Conant spoke for the 2nd time at the conference -- his tremendous efforts to put AIDS on the map in America were featured in the award winning film "And the Band Goes On..." on the AIDS epidemic and all it took to get the medical establishment to pay attention to AIDS. Dr. Conant, in his "retirement" has gotten very interested and involved in chronic tick-borne diseases. I met him personally at the Columbia University conference, and he is an incredibly humble and heroic individual, with tremendous compassion and a willingness to act when others do not. http://www.ilads.org/media/videos/videos_conant.php
DR. JOSEPH J. BURRASCANO: Borrelia Infections - diagnosis and treatment
DR. MARCUS CONANT: Cutaneous Mimics, Don't Be Fooled
DR. CHRISTINE GREEN: Coinfections And The Opportunistic Groupies
DR. JOSEPH JEMSEK: Advanced Techniques in Physical Diagnosis of Lyme Borreliosis Complex
DR. RICHARD HOROWITZ: Lyme Disease & Babesiosis: Updates on Diagnosis and Treatment 2011
DR. CHARLES RAY JONES: Pregnancy and Tick-borne Diseases: Gestational Lyme
DR. STEVEN J. BOCK: Overview of Integrative Patient Care in Tick-Borne Diseases
"Eat Crow With Lyme".
Read his story in the Home School Court Report
Click HERE for the story!
At this time our TOP PRIORITY is to support the
"Lyme andRelated Tick-Borne Disease Education, Prevention and Treatment Act" also known as PA SB 210
Please contact your SENATOR and ask for his or her vote to pass SB 210 in PA.
You, as their constituents, make a big difference in their awareness of the issues. Remember, many are NEW to the Senate and may be fully unaware of the bill or the magnitude of the problem.
Contact your REPRESENTATIVE and ask
for a meeting... again, many are not aware of the crisis in our state. Please
share with them. They can't help us if they don't know.
For a sample template letter that you can personalize CLICK HERE.
For LINKS to all state REPRESENTATIVES and SENATORS by county CLICK HERE.
CLICK HERE for a link to the video webcast.
To view the Public Hearing Agenda CLICK HERE. The video and audio links are also found on the page.
"LymeAction PA is led by a coalition of PA Lyme Advocacy and Support Groups, chaired by Julia Wagner, MontCoLyme, and including LDA-Southeastern PA, York Lyme Disease Support Group, The Lyme Society, The PA Farm Bureau, Chester/Delaware Counties, and The National Lyme Disease Association. CLICK HERE for information identifying more PA groups actively supporting this bill and effort.
Contact Us: Lyme Action PA EMAIL: email@example.com
Julia Wagner at Montogmery County Lyme Disease Support Group: MontCoLyme@aol.com
MontCoLyme Website: www.montcolyme.org
If you would like to receive updates from Lyme Action Pa please email us at firstname.lastname@example.org. Please put "add me to the list" in the subject line, and your contact information in the message: Your name (required); Your address (optional); Your telephone number (optional).