Madison Area Lyme Support Group

2 More Appointed to TBD Working Group

The most recent subcommittee appointees are:

Member for Other Tick-Borne Diseases and Co-infections:  Garth Nicolson, MD, PhD, President, Chief Scientific Officer and Emeritus Professor of Molecular Pathology, The Institute for Molecular Medicine

Member for Vaccine and Therapeutics:  Felipe C. Cabello, MD. Professor of Microbiology and Immunology, New York Medical College

Entire list of members found here:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/notices/index.html

Third TBD Working Group Meeting – Feb. 12, 2018

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2018-02-12/index.html

February 12, 2018 – Public Meeting

The Third Meeting of the Tick-borne Disease Working Group will be from from 12 pm to 4pm (Eastern).

This is an ONLINE meeting that is open to the public. It will be recorded. You must be registered to participate in the meeting and download or run the free Adobe Connect software:  https://events.kauffmaninc.com/events/tbdworkinggroup/register/?t=16

The focus of this meeting will be the work of the six subcommittees that will inform the writing of the Working Group’s Report to Congress and the Secretary of Health and Human Services. A full agenda will be posted on the website prior to the meeting.

The Working Group invites public comment on issues related to its charge. You will be asked if you would like to provide public comment when you register for this meeting.

Public comment may be provided verbally (by phone) or in writing. Thirty minutes has been set aside for verbal comments. Each speaker will be limited to 3 minutes. If more requests are received than can be accommodated, speakers will be randomly selected. Written comments should be no more than 2,000 words or 4 pages. Please send your written comments to the Tick-Borne Disease Working Group at tickbornedisease@hhs.gov. (subject line: written public comment)

Written comments and requests to make verbal comments must be received by February 7, 2018. Additional guidance will be sent by email to everyone who signs up for public comment.

For additional information, please visit the Tick-Borne Disease Working Group website or email us at tickbornedisease@hhs.gov.

Agenda

Noon – 12:05 pm
Call to Order and Welcome

John Aucott, Kristen Honey, and Rich Wolitski
12:05 pm -12:10 pm
Recap of Meetings One and Two
Purpose and Goals of Today’s meeting

John
12:10 pm – 12:20 pm
Report to Congress and the HHS Secretary: Overview

Rich
12:20 pm – 12:40 pm
Vote: Mission/Vision/Values of the TBDWG

Kristen
12:40 pm – 12:55 pm
Report on the Internal HHS Staff TBDWG
– Anna Perea, CDC Division of Vector-Borne Disease

Anna Perea
12:55 pm – 1:10 pm
Report on One State’s Experience: What was learned in Virginia – example of a successful collaboration
– Michael Farris, JD, LLM, President, CEO and General Council Alliance Defending Freedom

Michael Farris
1:10 pm – 1:30 pm
Review of roles and tasks of subcommittees and subcommittee members, including Town Hall

John, Kristen, and Rich
1:30 pm – 2:00 pm
Public Comment

Operator Assisted
2:00 pm – 2:05 pm
Break/Transition to Subcommittee Sessions

2:05 pm – 3:05 pm
Individual Subcommittees Meet—Members of the public are welcome to observe

1. Introductions

2. Inventory of Federal Actions
a, Does anything need to be changed or added this year to address important subcommittee issues?

3. Town Hall
a. What are the 2-3 key issues that the subcommittee would like to receive input in the form of public comment?

Subcommittee Co-Chairs
3:05 pm – 3:10 pm
Break to allow transition back to main webinar

3:10 pm – 3:40 pm Subcommittees Report Back
John and Kristen
Subcommittee Co-Chairs

3:40 pm – 4:00 pm
Meeting Recap and Next Steps

John and Kristen

Killer Green The Musical

Killer Green follows the lives of two pivotal couples in different stages of life as the two lead female characters battle a widely ignored chronic illness.  Based on biographical accounts, this musical attempts to uncover the dark truth behind how Lyme Disease affects its victims, educate viewers on the reality of these stories, and expose the widespread ignorance of the medical community.  This show has been graciously funded by The Wisconsin Lyme Network, a nonprofit organization dedicated to raising awareness for this cause.  https://wisconsinlymenetwork.org

Warning:  Killer Green depicts the reality of suicide, depression, and topics viewers might find disturbing but Lyme patients live with daily.

Audra Cashman is a student graduating in Musical Theater at Peck School of the Arts at the University of Wisconsin Milwaukee.  Killer Green is her Senior Honors Project.

Ms. Cashman’s parents both have Tick borne illness and her mother heads a local support group for patients.  Killer Green draws upon personal experience and the experiences of many local Wisconsin patients.

Canadian Consortium to Confront Escalating Lyme Crisis

https://www.lymedisease.org/canadian-lyme-consortium/

Canadian Lyme Consortium to confront escalating health crisis

Letter from the newly forming Canadian Lyme Consortium:

On behalf of a growing team of scientists, advocates, and clinicians, we wanted to let you know about a national research network that is taking shape to confront the escalating Lyme disease crisis.

The Canadian Lyme Consortium has evolved from the urgent need to accelerate progress in the understanding, detection, and treatment of Lyme disease, and to do so by meaningfully engaging patients in all levels of this process. The network unites advocates, established Lyme research groups including the Mount Allison Lyme Disease Research Network, The G. Magnotta Lyme Disease Research Lab at the University of Guelph, the Tick Microbiome Initiative at the University of Alberta, and other leaders in the fields of microbiology (Institut de Biologie Intégrative et des Systèmes (IBIS), Université Laval) and human and animal health who are eager to apply their skills to this challenging disease.

Together, we are committed to blazing a fresh trail informed by modern technologies, highly ethical research standards, and new approaches. As the Consortium develops, you can expect to see more visibility (website coming soon) as well as opportunities to contribute and participate. We look forward to working with you toward a brighter future.

Sincerely,

Vett Lloyd, Professor, Department of Biology, Mount Allison Lyme Research Network

Brenda Sterling-Goodwin, Patient representative

Roger C. Levesque, Full professor microbiology, Faculty of Medicine, Research Scholar of Exceptional Merit FRQS, IBIS, Université Laval

Melanie K. B. Wills, Adjunct Professor, Director, G. Magnotta Lyme Disease Research Lab, University of Guelph

Cezar Khursigara, Associate Professor, Department of Molecular and Cellular Biology, University of Guelph

George Harauz, Professor, Canada Research Chair, Department of Molecular and Cellular Biology, University of Guelph

Vladimir Bamm, Postdoctoral Research Associate, Department of Molecular and Cellular Biology, University of Guelph