Newsletter December 30, 2006

IACFS Patient Conference Final Agenda

Agenda Wednesday, January 10th 8:30 -9:00am Welcome & Opening Remarks Nancy Klimas, MD and Marly C. Silverman 9:00-10:00am Legislatively Speaking Tom Sheridan 10:00am Exhibit Hall Opens 10:00 – 10:15 am Break - Visit Exhibitors Concurrent Breakouts 10:15-11:00 am Advocacy Workshop: Fundraising FundamentalsJoanne Nowlin Davis, CFRE Understanding and Living with CFS/FM: Ergonomics, Posture and Natural Pain Relief Bernard Burton, D.C. Understanding and Living with CFS/FM: Lyme Disease Garth Nicolson, Ph.D. Advocacy Workshop: Empowerment within the CFS Community Kim McCleary Concurrent Breakouts 11:00-12:00 pm Advocacy Workshop: Media Panel: How to Convey your Advocacy Message to the Media Moderator: Marly C. Silverman Panel: Martin Kramer, Ron St. John, Marla Schwartz Understanding and Living with CFS/FM: Fibromyalgia and Chronic Fatigue Syndrome en Espanola SPANISH SPEAKING ONLY Maria Gutierez, MD & Jackie Junco-Valderes, MD Understanding and Living with CFS/FM: Social Security Disability Issues Lyle Lieberman, JD & Robert Gutierrez, JD Understanding and Living with CFS/FM: Effective Treatment of CFS & Fibromyalgia-including new research on D-Ribose Jacob Teitelbaum, MD 12:00-1:15 pm Lunch Break Concurrent Breakouts 1:15-2:15 pm Understanding and Living with CFS/FM: Social Security Disability en Espanola SPANISH SPEAKING ONLY Robert Gutierrez, JD Advocacy Workshop: Media Training 201 You need to sign up ahead of the conference for this presentation if you are not part of the 2007 Advocates Extraordinaire! Leadership and Advocacy Training Program. Martin Kramer Understanding and Living with CFS/FM: Private Disability Issues and ERISA SPANISH SPEAKING ONLY Steve Krafchick, JD Advocacy Workshop: Media Training 101 You need to sign up ahead of the conference for this presentation if you are not part of the 2007 Advocates Extraordinaire! Leadership and Advocacy Training Program. Diana Mohoreanu Concurrent Breakouts 2:15 - 3:15 pm Understanding and Living with CFS/FM: Legal and Medical Issues Affecting Employment for the Disabled and Chronically Ill Moderator: Jason Newfield, JD Panel: Steve Krafchick, Alicia Paulino-Grishman, Lyle Lieberman, JD, Robert Gutierrez, JD, Rosa Berrocal & Ken Friedman, Ph.D. Advocacy Workshop: Media Training 201 You need to sign up ahead of the conference for this presentation if you are not part of the 2007 Advocates Extraordinaire! Leadership and Advocacy Training Program. Martin Kramer Understanding and Living with CFS/FM: Technology and the CFS Patient Rebecca Palmberg Advocacy Workshop: Media Training 101 You need to sign up ahead of the conference for this presentation if you are not part of the 2007 Advocates Extraordinaire! Leadership and Advocacy Training Program. Diana Mohoreanu 3:15-3:30 pm Break - Visit Exhibits 3:30-4:45 pm Moving our Agenda Forward: Brainstorming Session for All Advocacy Groups Co-Moderator: Jason Newfield, JD Co-Moderator: Janet Canterbury, PhD Group Leaders: Alexander Kushch, PhD, Beth Wheeling, PhD, Alicia Paulino-Grishman, JD, Justin Frankel, JD, Connie Borschel, Steve Krafchick, JD & Barry Gregory, MD 4:45-6:00pm Strategy Meeting: Finalize Consensus and Develop Preliminary Patient Issues For Future Presentation to the IACFS Executive Board Co-Moderator: Jason Newfield, JD Co-Moderator: Janet Canterbury, PhD Group Leaders: Alexander Kushch, PhD, Beth Wheeling, PhD, Alicia Paulino-Grishman, JD, Justin Frankel, JD, Connie Borschel, Steve Krafchick, JD & Barry Gregory, MD 6:00-6:30pm Attendee Networking Reception –Day One of U-pick Raffle, Announcement (Launching) of PANDORA Box Art Auction 6:30-7:30pm Agneda Thursday, January 11th 9:00-10:15am What’s New in CFS & FM Science, Treatment and Demographics Introduction: Nancy Klimas, MD, President, IACFS, Moderator: Eleanor Hanna, MD, Associate Director, Special Projects and Centers, Office of The Director, National Institute of Health Panel: Members of the IACFS Board of Directors: Dharam V. Ablashi, DVM, MS, Dip. Bact., Kenny De Meirleir, MD, PhD, Birgitta Evengård, MD, PhD, Leonard A. Jason, PhD, Hirohiko Kuratsune, MD, D. Med. Sci. & Gudrun Lange, PhD 10:15-11:00am Break - Visit Exhibits Concurrent Breakouts 11:00-12:00pm Medical Research and Treatment Updates I: Integrative & Complimentary Medicine Kenny De Meirleir, MD, PhD Medical and Research Updates II: Pain Steven Croft, MD Managing Your Quality of Life Track: The Art and Science Behind coping and Empowerment Patricia A. Fennell, MSW, LCSW-R, Gudrun Lange, PhD, Fred Friedberg, PhD & Marla Silverman Family Issues and Pediatrics: Finding Medical, School and Community Resources to Treat a Child with CFS Leonard A. Jason, PhD, David Bell, MD & Charles Lapp, MD 12:00-1:30pm Lunch Break-Visit Exhibits Concurrent Breakouts 1:30- 2:30pm Managing Your Quality of Life: Making the Most of Your Doctor’s Appointments Lucinda Bateman, MD Medical Research and Treatment Updates I: Multiple Chemical Sensitivities Alex Delgado, PhD, Ed.D. Family Issues and Pediatrics: New Pediatric Case Definition for CFS Leonard A. Jason, PhD & David Bell, MD Medical Research and Treatment Updates II: Exercise Challenges for the CFS Patient Kenny De Meirleir, MD & Chuck Lapp, MD Concurrent Breakouts 2:30- 3:30pm Family Issues - Couples, Sex & Family Patricia A. Fennell, MSW, LCSW-R Medical and Research Updates I: Sleep Disorders are they the Cause or the side effect of CFS David Bell, MD Medical Research and Treatment Updates II: Risk Factors for people with CFS Leonard A. Jason, PhD 3:30-4:00pm Break - Visit Exhibits 4:00-5:00pm Concurrent Breakouts Medical and Research Updates I: HHV 6 Update Dharam V. Ablashi, D.V.M., M.S., Dip. Bact. Medical and Research Updates II: Antiviral Therapy for CFS patients with Elevated Antibodies to HHV-6 and EBV Jose G. Montoya, MD 4:00-5:15pm Ask the Experts Moderator: Nancy Klimas, MD Panel: IACFS Board of Directors: David S. Bell, MD, Lucinda Bateman, MD, Kenny De Meirleir, MD, PhD, Patricia Fennell, MSW, CSW-R Fred Friedberg, PhD & Charles W. Lapp, MD 5:15-7:15 Auction and Cash Bar 7:15- ?? Attendee Banquet P.A.N.D.O.R.A. Sand Castle Awards Keynote Address: Paul R. Cheney, MD, PhD The State of the Art of CFS

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