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A collaborative effort
Agenda – October 5, 2013

Time Agenda Item/Topic
7:30 am Registration and Continental Breakfast
Morning Session: 8:30 to Noon
8:30 am Welcome: Sandra Cheldelin,* Ph.D, Facilitator, Overview of the Day’s Activities & Agenda

Welcome by Gary Kreps, Ph.D, Director, George Mason University Center for Health and Risk Communications
8:45 am The Collaborative Effort/ Open Communication Forum – Sandra Cheldelin, Facilitator

  • Explanation of goals and ground rules for the day
8:55 am Guest Speaker – Ben Beard, Ph.D, CDC – Chief, Bacterial Diseases Branch, Division of Vector-Borne Diseases
Lyme Disease in the U.S. – Challenges and Opportunities

  • Q&A
9:30 am Introduction to PAL – Sandra Cheldelin, Facilitator

  • Purpose, Monte Skall, Executive Director, National Capital Lyme Disease Association
  • Vision, Linda Lobes, President, Michigan Lyme Disease Association
  • Values, Elizabeth Woods, LDUC Canadian Group
  • Benefits, Lisa Torrey, President, National Tick-Borne Disease Advocates
9:55 am Keynote Speaker – Joseph Jemsek, M.D., Jemsek Specialty Clinic, Washington D.C.
Into The Light: Optimism and Strength Through Unity
10:35 am Honorary Award Presentation, Joseph Jemsek, M.D., Recipient
Coffee Break 10:45 to 11:00
11:00 am Advocates Aim for Change and Share Successes – Sandra Cheldelin, Facilitator

  • David Roth, Tick-Borne Disease Alliance (New York)
  • Leo Shea, M.D., President, ILADS
  • Elizabeth Wood, Canadian National Lyme and Associated Diseases/LDUC
  • Lisa Torrey, National Tick-Borne Disease Advocates (Texas)
  • Lori Kroger, PANDORAorg (Michigan)
  • Eva Haughie, Empire State Lyme (New York)
  • Carol Kaye, LifeLyme The Landford Foundation (Florida)
  • Joseph Annibali, M.D., Amen Clinics (Virginia)
  • Mary Jane Heppe, The Mid-Columbia Lyme Group (Oregon)
  • Char Healy, Hope To Heal Lyme (Virginia)
Lunch Break: Noon to 1:00 pm (Box lunches provided for working lunch)
12:20 pm Nanotrap Lyme disease Urine Antigen Test: Introduction to George Mason University’s Center for Applied Proteomics and Molecular Medicine (CAPMM)
Afternoon Sessions: 1:00 to 5:30
1:00 pm Advocates Aim for Change and Share Successes – Sandra Cheldelin, Facilitator

  • Jason Chow, OD, NC Lyme Advocacy (North Carolina)
  • Monte Skall, National Capital Lyme Disease Association (D.C., Virginia, M.D., NC)
  • Linda Lobes, Michigan Lyme Disease Association
  • Connie Dickey, Lyme Disease Association of Tennessee
  • Julia Wagner, PA Lyme Resource Network (Pennsylvania)
  • Regina Weichert, Lyme Nation (New York)
  • Melissa Bell, Florida Lyme Disease Association
  • Josh Cutler, Mayday Project (Washington D.C.)
  • Marilyn Williams, Lyme Disease Association- Eastern Shore of Maryland, Inc.
  • Trish McCleary, S.L.A.M (Sturbridge Lyme Awareness of Massachusetts)
  • Lane Poor, The Lyme Newport Support Group (Rhode Island)
1:50 pm What Could Congressional Investigative Hearings Accomplish? – Sandra Cheldelin, Facilitator

  • Mark B. Harkins THE GOVERNMENT AFFAIRS INSTITUTE AT GEORGETOWN UNVERSITY Topic: The Role of Congress in Investigating the Federal Government and Independent Agencies
  • Gregg Skall, Esq., Womble Carlyle Sandridge & Rice LLP Topic: Applying investigative hearings to Lyme and Tick-Borne Diseases
Coffee Break 2:40 to 3:00 pm
3:00 pm The Lessons Learned in Advocating for State Legislation – Sandra Cheldelin, Facilitator

Virginia Lyme Disease Information Disclosure Act

  • Delegate Barbara Comstock, R(34th), Patron, HB 1933
  • Susan R. Green, Esq., Attorney-at-Law
  • Monte Skall, Executive Director, National Capital Lyme Disease Association
  • Rob Catron, Alcalde & Fay, Government Relations

Q&A follows – Sandra Cheldelin, Facilitator
3:30 pm Where Do We Go From Here? – Sandra Cheldelin, Facilitator

Breakout/Brainstorming

  • What can PAL do to support activists efforts that would have the greatest impact for positive change in our community?
  • What does PAL need to do to help encourage and support your fundraising efforts?
  • What can PAL do to further patient support with Lyme and tick-borne diseases?
4:30 pm Achieving A Common Purpose – Sandra Cheldelin, Facilitator

Report back session and moving forward

  • Identification and discussion of areas of agreement
  • Setting up the next meeting/webinar
  • Closing remarks

2nd Annual PALtad Partnership Forum – 1 year out
Adjournment – Reception and Light Refreshments 5:30-6:30 pm

*Sandra L. Cheldelin: Ed. D., University of Florida. Vernon M. and Minnie I. Lynch Professor of Conflict Resolution Intraorganizational and public-sector conflict, multiparty issues. Psychological dimensions of conflict.

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