From The National Capital Lyme Disease Association
FIRST PUBLIC TESTIMONY HEARING FOR VA LYME DISEASE TASK FORCE

Purcellville, VA- Thursday, February 10, 2011. Virginia Governor Bob McDonnell’s Lyme Disease Task Force will conduct its first hearing to receive testimony from the public on Tuesday, March 1 from 1-4 PM at Regent University in Virginia Beach, VA. Anyone who wishes to address the chairman Michael Farris and other members of the task force is invited to speak.

Input from the public hearings will be combined with information from four expert witness hearings to develop recommendations to the governor to assist victims of Lyme disease, enable better diagnosis and treatment, and help lower the incidence of tick-borne disease. A second public testimony hearing will be held in Richmond on March 1 from 7-10 PM, the venue yet to be determined, with additional hearings throughout the state later in March. All hearings are free and open to the public.

Information for the first public testimony hearing:

Tuesday, March 1 from 1-4 PM in the Moot Court Room (in Robertson Hall, first floor)

Regent University
1000 Regent University Drive
Virginia Beach, VA 23464

http://www.rege...mapflyer.pdf
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From The National Capital Lyme Disease Association
GOVERNOR’S LYME DISEASE TASK FORCE TO CONDUCT SECOND HEARING

Richmond, VA- Friday January 7, 2011. Virginia Governor Bob McDonnell’s appointed Lyme Disease Task Force will conduct its second expert testimony hearing on Friday, January 21, 2011 in the Perimeter Center outside Richmond. The hearing is designed to gather important information about methods of prevention of this rapidly spreading vector borne illness. A similar hearing held in November focused on improving diagnostic tests and increasing awareness among patients and medical practitioners. Expert witnesses for this month’s session will include representatives from academia, public health and government agencies (see below for speaker affiliations).

More than nine hundred new cases of Lyme in Virginia were reported in 2009, and the CDC indicates ten times as many residents, particularly children, may be afflicted with this insidious disease. According to the Virginia Department of Health (VDH), in addition to the Eastern Shore and Northern Virginia, areas of high incidence now include counties to the south and west. “Whole families are ill and are being harmed,” says Michael Farris, chairman of the Task Force.

Mr. Farris is a United States constitutional lawyer and the Chancellor of Patrick Henry College. Members of the task force include physicians, patient representatives, state health and wildlife officials, a veterinarian and other key professionals.

In addition to further expert testimony hearings, the task force will hold five geographically-organized forums to gather the testimonies of patients and caregivers. These forums will be held over the course of 2011 in Northern Virginia, Norfolk, Richmond, Roanoke and Harrisonburg. The output of the expert hearings and patient forums will be developed into recommendations for Governor McDonnell’s consideration.

All hearings are free and open to the public. The January 21 hearing will be held from 1:00PM until 4:00PM at the Perimeter Center in the Commonwealth Conference Center on the second floor. The Perimeter Center is easily accessible off 1-64 at 9960 Mayland Drive, Henrico, Virginia 23233. Ample free parking is available.

Expert witnesses:
Dr. David N. Gaines
Public Health Entomologist
VA Department of Health, Office of Epidemiology

Nelson Lafon
Assistant Deer Project Leader
VA Department of Game and Inland Fisheries

J. Mathews (Mat) Pound, PhD
Research Entomologist
USDA-ARS Knipling-Bushland U.S. Livestock Insects Research Service

Dr. Charles Apperson
Public Health Entomologist
North Carolina State University

Kerry Clark, M.P.H., PhD.
Professor of Epidemiology and Environmental Health
University of North Florida

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The National Capital Lyme & Tick-borne Disease Association is asking for volunteers to assist at the 2011 NBC 4 Health and Fitness Expo on January 15 &16. Call 703 821-8833 or email natcaplyme@natcaplyme.org to sign-up to help. Volunteers will greet & educate the public at the NatCapLyme booth or staff the Be the Match Registry Booth.

From NatcapLyme:
Please read and consider the following message from Elizabeth Ballas, patient advocate at the Jemsek Clinic writing on behalf of Dr. Jemsek’s daughter.

Hello,

I am writing to you today regarding 6 year old Jordan Jemsek, and her need to find a bone marrow donor. Jordan was first diagnosed with acute myeloid leukemia (AML) in September 2009. After months of chemotherapy and treatment, she was declared to be in remission in April 2010. However, Jordan relapsed with AML in November 2010, and so the fight to save her life continues. She is currently receiving more chemotherapy prior to a bone marrow transplant that is tentatively scheduled for March 2011. She still has yet to find a match within her family or any of the bone marrow registries, so our main focus at this time is to get as many people as possible to sign up to donate...this is where I could use your help!

On January 15 & 16, NBC 4 is again hosting their Health & Fitness Expo at the DC Convention Center. One of the booths there will be the "Be the Match" registry where they will host a donor drive. Jordan will be featured on flyers to be handed out, along with others who still need a match. I've attached the flyer that was made up for this particular drive, which you're welcome to also distribute! Download it here.

Thank you all SO much for your help & support!!

Best Regards,

Elizabeth Ballas
Patient Advocate
Jemsek Specialty Clinic
2440 M Street NW, Suite 205
Washington, DC 20037
P: 202.955.0003, ext 212
F: 866.228.5914

http://www.jemsekspecialty.com

Roanoke Times Story on Lyme: Lost in the Woods: Navigating the Chronic Lyme Debate

Parts 2 and 3 are out! Go Check it out and don't forget to leave your comments.
http://blogs.roanoke.com/lyme/

The Roanoke Times is Looking For Reader Response

The Roanoke Times will publish reader response tomorrow and Tuesday to the article below. Your comments are essential for continued coverage. Post your comments as soon as possible!

To comment, go to, http://www.roanoke.com/lyme

New Roanoke Times Story on Lyme
A Perfect Response to Chicago Tribune

The Roanoke Times begins a multi-part story on Lyme Disease

Salvos launched in Lyme dispute or Visit Site: http://www.roanoke.com/news/roanoke/wb/271231
By Beth Murphy

The rise of the tick-borne disease in Virginia has created a political and medical divide. Part one in a three-day series.

Be sure to watch the video and add your comments - Share your thoughts on the Lyme disease debate http://blogs.roanoke.com/lyme/

From The National Capital Lyme Disease Association
GOVERNOR’S LYME DISEASE TASK FORCE HOLDS FIRST OF TWO HEARINGS

Purcellville, VA- Wednesday, December 1, 2010. Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville. The first of two hearings, attended by nearly 200 patients, was designed to gather important information about the accuracy of diagnostic tools and efficacy of treatments. In addition, the Task Force seeks ways to increase awareness of this devastating disease to aid Virginia residents and medical practitioners.

A 12-member panel comprised of healthcare experts heard testimony from ten witnesses* ranging from fathers whose children were misdiagnosed as mentally ill to doctors discussing the financial impact of Lyme in Virginia. Michael Farris, chairman of the Task Force, said “For the first time we’re creating a useful record of current and quantifiable information together with the divergent views of patients, doctors and researchers in a forum where they can hear and consider each others’ perspectives.” *See panel and witness composition at end of release.

Monte Skall, Executive Director of the National Capital Lyme Disease Association, and a member of the panel said, “Chronic Lyme patients often feel abandoned by medicine. We’re realizing our dream of bringing together experts that treat infectious disease, researchers and the real victims of chronic Lyme and its co-infections in the hope of finally making real progress for the treatment of this disease.”

Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient’s annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.

Dr. Marty Schriefer, Chief of Diagnostic and Research section at the Centers for Disease Control, traveled from Colorado to share his knowledge with the panelists. “In 2009 there were 232 cases of Lyme disease in Fairfax County and another 201 in Loudoun County,” he said. Mr. Farris expressed concern the CDC surveillance data actually under-report incidence and prevalence based upon narrow case definitions and the lack of effective reporting requirements. Five fathers and one mother testified to the emotional and financial toll on families. Peter Demitry, a physician, former Navy test pilot and father of ill children received a standing ovation from the audience when he spoke emotionally of the contrast between the early health-filled years of his family and the nine years following his teenage son’s tick bite. He said “Lyme moms” and his own patients “taught me more in two years than I’d learned practicing orthodox medicine in twenty.” Eric Tibbetts, Retired Captain- US Navy, spoke of errors made in his son’s care and urged more effective adoption of procedures for earlier Lyme and co-infection diagnoses.

The final speaker was Dr. Paul G. Auwaerter representing the Infectious Diseases Society of America. A Johns Hopkins University clinical researcher, he detailed the complexities of diagnosing and treating Lyme. “We have more bacterial cells in our body than human cells,” he said. In addition to the two expert testimony hearings, a series of five geographically-organized “listening forums” will be conducted to gather the testimonies of patients and caregivers. These forums will be held over the course of 2011 in Northern Virginia, Norfolk, Richmond, Roanoke and Harrisonburg. The output of the expert hearings and patient forums will be developed into recommendations for Governor McDonnell’s consideration.

The next hearing will be held in Richmond on January 21 from 1-4PM.
All hearings are free and open to the public.

From The National Capital Lyme Disease Association
Members and Friends

The courage the Jemsek family has shown facing life's hurdles has given us a example of how to deal with our own adversities. As they face renewed challenges, it is time for us all to reach out and do what we can to support them in their hour of need.

Please read this letter from Dr. Jemsek to the Lyme Community. While Lyme patients cannot be direct donors, we can ask our healthy friends, family members and neighbors to consider this humanitarian request for a fine family that needs our support. Please recirculate this message widely and as quickly as possible.

Thank you,
NatCapLyme

----------------

Dear patients, friends, and family,
My wife Kay and I are writing to you today to make a somber request on behalf of our six year old daughter, Jordan. As most of you may already know, last September 2009 Jordan was diagnosed with acute myelogenous leukemia (AML). She received outstanding care during several rounds of extended chemotherapy while hospitalized for 6 ½ months at Presbyterian Hospital in Charlotte at the Hemby Cancer center. When Jordan was declared in remission we were finally able to bring her home on Easter day this Spring. After several joyful months at home with Jordan, this past week we were devastated to learn that Jordan has relapsed. In the upcoming weeks, she will begin receiving chemotherapy in preparation for a bone marrow transplant that she will have later this winter.

Last year, after much research aided by the excellent support of the Hemby physicians in Charlotte and the Pediatric Oncology Department at Children’s Hospital in Washington, DC, we were already exploring the option for Jordan to have a bone marrow transplant in the event that the chemotherapy was ineffective. Unfortunately, neither members of her family, nor those in the national donor registry provided a satisfactory match. Unfortunately, at this time we are left without another option and must proceed with a bone marrow transplant for Jordan to survive. We anticipate that the transplant will occur in March/April 2011 at Children’s Hospital in DC after Jordan undergoes an estimated 3 months of induction chemotherapy at the Hemby Center; she is on her way to the hospital with us today. In order to increase the likelihood that we find a better match for Jordan, we are asking friends and family to participate in joining the National Marrow Donor Program. Because patients are most likely to match someone of their own race or ethnicity, please be aware that Jordan comes from a Scottish, Irish, and Ukrainian background. We have outlined the simple steps below in how one can get signed up to be part of this registry.

For all of our patients and others suffering from Lyme Borreliosis Complex, the highly disturbing irony is that the National Marrow Donor Program (NMDP) does recognize chronic Lyme disease while the general community does not. As part of the NMDP medical guidelines, patients with ‘chronic Lyme disease ‘ may not register (details on the linked site below). However, we would humbly request that those individuals struggling with Lyme Borreliosis encourage other family members and friends to consider joining the registry.

As for those of you wanting to be tested specifically as a match for Jordan, i.e. a designated donation, due to the complicated process and cost of being tested privately, we instead recommend and request that you enter the general registry. We greatly appreciate all of the prayers and overwhelming support that our family has received, and we ask for you all to continue to pray as we continue on our journey towards Jordan’s recovery from this devastating disease. If you have questions, please contact Elizabeth Ballas at mailto:eballas@jemsekspecialty.com?subject=Jordan Jemsek. As before, regular updates will be posted to http://www.caringbridge.org/ under keyword jordanjemsek.

God Bless,
Dr. and Mrs. Joseph G. Jemsek

From The National Capital Lyme Disease Association
LYME DISEASE TASK FORCE INITIAL HEARING November 30, 2010

Members & Friends and Fellow Virginians,

Previously, we advised you of the upcoming Virginia Lyme Disease Task Force initial hearing on Tuesday, November 30, 2010 at Patrick Henry College in Purcellville (www.phc.edu). We are hoping you are able to give this meeting the highest possible priority and plan to attend. A strong showing from the patient community has always served us well and will again demonstrate the intense concern of Virginians over this disease and the need for further public education and research in the commonwealth.

This will be the first of two expert testimony hearings to be held by Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force. The hearings are designed to gather important information about the accuracy of diagnostic tools and the efficacy of treatments, and to explore how best to increase awareness of this devastating disease among Virginia residents and medical practitioners.

Dr. Paul Auewater from Johns Hopkins will be representing the IDSA and Dr. Dan Cameron will represent the ILADS Association. It will be a full day of both Expert and Lay testimony; see the agenda below. If you haven’t planned to attend this very important meeting we ask that you reconsider and make your presence known. This will be the only meeting that will address the important area of Diagnosis and Treatment. Your presence made a difference in Richmond when HB 512 was introduced and it will also make a difference here.

Hope to see you all there!

From The National Capital Lyme Disease Association
GOVERNOR ANNOUNCES INITIAL HEARING OF LYME DISEASE TASK FORCE

Purcellville, VA - Friday, November 12, 2010. Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force will conduct the first of two expert testimony hearings on Tuesday, November 30, 2010 at Patrick Henry College in Purcellville. The hearing is designed to gather important information about the accuracy of diagnostic tools and efficacy of treatments and to discuss ways to increase awareness of this devastating disease to aid Virginia residents and medical practitioners.

More than nine hundred new cases of Lyme in Virginia were reported in 2009, and the CDC indicates ten times as many residents, particularly children, may be afflicted with this insidious disease. “Whole families are ill and are being harmed by having to go from doctor to doctor without receiving a timely diagnosis and an effective treatment plan,” said Michael Farris, chairman of the Task Force. Mr. Farris is a United States constitutional lawyer and the Chancellor of Patrick Henry College. The task force is comprised of physicians, patient representatives, state health and wildlife officials, a veterinarian and other key professionals. In addition to the two expert testimony hearings, a series of five geographically-organized forums will be conducted to gather the testimonies of patients and caregivers. These forums will be held over the course of 2011 in Northern Virginia, Norfolk, Richmond, Roanoke and Harrisonburg. The output of the expert hearings and patient forums will be developed into recommendations for Governor McDonnell’s consideration.

All hearings are free and open to the public. The November 30 hearing will be held from 9:30AM until 3:00PM (with a lunch break) in the gymnasium at Patrick Henry College at Ten Patrick Henry Circle, Purcellville, VA 20132.