Transverse Myelitis Association
Journal Volume 3 - June 2008

Article 9

TMA logo/Project Restore logo

The Transverse Myelitis Association in conjunction with the Johns Hopkins’ Project RESTORE (Transverse Myelitis and Multiple Sclerosis Centers) present:
The 3rd International Rare Neuroimmunologic Disorders Symposium
July 16 – 19, 2008, Seattle, Washington

http://www.myelitis.org/2008SeattleSymposium

The Transverse Myelitis Association and the Johns Hopkins Project RESTORE are co-sponsoring the 2008 Rare Neuroimmunologic Disorders Symposium, July 16 – 19, 2008 in Seattle.  The symposium is an educational and networking opportunity for people who have Transverse Myelitis, Multiple Sclerosis, Acute Disseminated Encephalomyelitis, and Neuromyelitis Optica, their family members and caregivers, the medical professionals who provide clinical care to people with these disorders, as well as scientists and physicians who are performing research in rehabilitative and restorative therapies.  There is no more intensive educational program offered anywhere in the world that focuses on all of these rare neuroimmunologic disorders of the central nervous system.  A detailed program agenda is provided below.  The world’s experts on these disorders will be presenting at the symposium and will also be available to answer your questions.  We know that by attending this symposium, you will become a more effective advocate for your medical care.  We urge you to attend and we encourage you to bring your family members.

Featured Speakers

http://development.cympak.com/ESG/Seattle/pic/speakers1.jpg

 

In 1996, Allen Rucker had no real complaints: happily married, two kids, a house in West Los Angeles. At the age of 51, his career as a television writer was looking up.  Then one Tuesday, out of the blue, he started to feel a burning sensation around his waist.  Within an hour, he was paralyzed from the waist down by transverse myelitis.  The Best Seat in the House chronicles in the most honest and candid way Allen’s experiences with getting TM.  His very genuine, emotional and humorous insights make this a must read for everyone in the TMA community.  Allen has appeared on the Montel Williams Show; he has traveled extensively as an advocate in the disability community and is a regular contributor to Ability Magazine.  

 

 

 

http://development.cympak.com/ESG/Seattle/pic/speakers2.jpg

 

Donna Jackson Nakazawa is a nationally acclaimed researcher, writer and public speaker on health and family issues. She is the author of the book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope (Touchstone/Simon and Schuster), an investigation into the reasons behind today’s alarming rise in rates of autoimmune diseases (multiple sclerosis, lupus, type 1 diabetes, thyroiditis, and dozens of other immune mediated diseases) in industrialized countries around the world.  Donna Jackson Nakazawa’s book contains a forward by Dr. Douglas Kerr, as well as an extensive discussion of Dr. Kerr’s research at the Johns Hopkins Transverse Myelitis Center.

 

 

 

Hotel Information

The symposium will be held at the Redmond Marriott Town Center To make your reservation at the special group rate (approximately $170 per night without taxes), you need to contact Katina Alley and ask for the “Rare Disorders Symposium” rate: (425)498-4024; from 8am - 4pm Monday - Friday PDT.  If it would be easier for our international members to reach Katina by email, you may reach her at: katina.alley@marriott.com.  We cannot guarantee you either a room in the Marriott or the group rate, if you make your reservations after June 1, 2008.  The program will begin on Wednesday evening, July 16th and will be completed with the dinner banquet on Saturday evening, July 19th.

Symposium Registration

The Symposium Registration Fee is $290.00 USD per person.  The registration fee covers three breakfasts, three lunches, breaks and the Gala evening event dinner on Saturday; a value well exceeding the cost of registration! 

Whether you pay the registration fee with a credit card or by check, you must register online at:
http://dev.esg.us/Seattle/registration.php

When you register on this page, you will receive a confirmation code.  Please print this page for your records.  You may make a secured credit card payment via paypal from this page or you will have the option of paying by check.  If you pay by check, please include a copy of the registration page along with your check made payable to The Transverse Myelitis Association and send to:

Rare Disorders Symposium Registration
c/o The Transverse Myelitis Association
1787 Sutter Parkway
Powell OH 43065-8806 -3125

You must register online in order to receive the confirmation code and to ensure that we have a record of your registration.  If you do not have internet access or a computer, please ask a family member or friend to perform the online registration for you. 
 
Conference Cancellation Policy
Cancellations made before May 16, 2008 will be charged 50% of the conference fee.  Registrants who cancel on or after May 17, 2008 will be responsible for the entire registration fee.

For assistance or general questions, please send an email to plazzeri@myelitis.org or call (425)883-7914.

 

3rd International Rare Neuroimmunologic Disorders Symposium Clinical Program

Wednesday July 16, 2008

 

4:00 – 6:00 pm                        Onsite Registration

6:00 – 6:30 pm                        Welcome Remarks
                                    Douglas A. Kerr, MD, PhD, Johns Hopkins University
                                    Sanford Siegel, PhD, Transverse Myelitis Association

6:30 – 7:30 pm                        RNDS Inaugural Presentation and Keynote
                                    Allen Rucker, Author ‘The Best Seat in the House’
                                   

Thursday, July 17, 2008

 

Morning Session

7:00 - 9:00                   Registration and Continental Breakfast
           
9:00 - 9:15                   Introduction
Douglas A. Kerr, MD, PhD

9:15 - 9:45                   Neuroimmunologic Disorders: An Overview
Benjamin M. Greenberg, MD, MHS
Johns Hopkins University, Baltimore, MD

9:45 - 10:15                 Brain, Spinal Cord and Cells: The Actors and The Movie
A Neuro-primer for Non-Neurologists
Carlos A. Pardo, MD
Johns Hopkins University, Baltimore, MD

10:15 - 10:45               Understanding the Immunopathology of Central Nervous System Diseases           
Mariko Kita, MD
Virginia Mason, VA

10:45 - 11:00               Refreshment Break

11:00 - 11:30              Acute Disseminated Encephalomyelitis (ADEM)
                                    Benjamin Greenberg, MD, MHS
Johns Hopkins University, Baltimore, MD

11:30 - 12:00               Multiple Sclerosis (MS)
James Bowen, MD
MS Center at Evergreen, Kirkland, WA

12:00 - 1:00                 Lunch

Afternoon Session

 

1:00 - 1:30                   Neuromyelitis Optica (NMO) or Devic’s Disease
Sean Pittock, MD
Mayo Clinic

1:30 - 2:00                   Transverse Myelitis (TM)
Douglas A. Kerr, MD, PhD
Johns Hopkins University, Baltimore, MD

2:00 - 2:30                   Pediatric Transverse Myelitis
Frank Pidcock, MD
Kennedy Krieger Institute, Baltimore, MD

2:30 - 3:00                   Pediatric TM as different from CIDP, and Pediatric ADEM
                                    Gregory Barnes, MD/PhD
                                    Vanderbilt University, TN

3:00 – 3:30                  Neurosarcoidosis
                                    Carlos Pardo, MD
Johns Hopkins University, Baltimore, MD

3:30 – 3:45                  Refreshment Break

3:45 – 4:15                  Neurological Manifestations of Lupus and other Systemic Rheumatologic Disorders
                                    Julius Birnbaum, MD
Johns Hopkins University, Baltimore, MD

4:15-4:45                     Accelerated Cure Project Presentation
                                    Benjamin Greenberg and Art Mellor

5:00 – 5:30                  The Auto-Immune Epidemic: Bodies Gone Haywire in a World Out of Balance and the Cutting Edge Science That Promises Hope
                                    Author: Donna Jackson Nakazawa
                                    Panel Discussion and Q&A

 

Friday, July 18, 2008

 

Morning Session

7:30 – 9:00                  Continental Breakfast 

9:00 – 9:30                  Acute Therapies in Demyelinating Diseases
Benjamin Greenberg, MD
Johns Hopkins University, Baltimore, MD

9:30 – 10:00                Choosing a Treatment for New Diagnosis of Multiple Sclerosis

                                    Kathleen M. Costello, M.S., C.R.N.P., M.R.C.P. (UK), M.S.C.N

                                    University of Maryland Medical Center, Baltimore, MD

10:00 – 10:30              Future Immunotherapies and Neuroprotective Therapies
                                   Mariko Kita, MD
Johns Hopkins University, Baltimore, MD

10:30 – 10:45              Refreshment Break

10:45 – 11:15              Fatigue in Autoimmune Neurological Diseases

Kathleen M. Costello, M.S., C.R.N.P., M.R.C.P. (UK), M.S.C.N

                                    University of Maryland Medical Center, Baltimore, MD

11:15 – 12:00              Depression and Cognitive Dysfunction
Adam I. Kaplin, MD, PhD
Johns Hopkins University, Baltimore, MD

12:00 - 1:00                 Lunch

Afternoon Session

 

1:00 – 1:30                  Medical and Interventional Approaches to Neuropathic Pain and Paresthesias
Denise Taylor, MD
University of New Mexico, Albuquerque, NM

1:30 – 2:00                  Sexual Dysfunction
Bobbie Severson, ARNP
MS Center at Evergreen, Kirkland, WA.

2:00 – 2:30                  Bladder Dysfunction and Management
Claire C. Yang, MD
University of Washington, Seattle, WA

2:30 - 3:00                   Spasticity Management
Frank Pidcock, MD
Kennedy Krieger Institute, Baltimore, MD

3:00 – 3:30                  Patient Centered Care: The Role of Self-management
Stephen Wegener, PhD
Johns Hopkins University, Baltimore, MD

3:30 - 3:45                   Refreshment Break

3:45 – 4:15                  Self Advocacy and Employment with Disabilities
                                    Sandy Hanebrink, OTR/L
                       
4:15 – 4:45                  Obstetric Issues in Women with Demyelinating Disease
Donna Chattin, BSN, RN
Benjamin M. Greenberg, MD, MHS

5:00 – 6:30                  Workshop Sessions
Workshops will be rotated twice
Session 1 – 5:00 – 5:40 pm
Session 2 – 5:50 – 6:30 pm    

A.        Adjusting to the Disease:  Pitfalls, Precautions and 
Pleasures for Patients and their Caregivers
                                                Adam I. Kaplin, MD, PhD 

B.         Support for Women during Pregnancy and Preconception                          Donna Chattin, BSN, RN

C.        Spasticity
                                                Frank Pidcock, MD

D.        Pain Management
                                                Denise Taylor, MD
                                   
E.         Complementary and Alternative Therapies AND Equine Therapy
                                                Pat Kennedy, RN, CNP
                                                Moira Baynes, RN
                                               

Positive Growth in the Face of Adversity

Stephen Wegener, PhD

G.        Self Advocacy: Navigating Government and Community Support Programs
            Sandy Hanebrink, OTR/L

Saturday, July 19, 2008
Morning Session

7:30 – 9:00                  Continental Breakfast 

9:00 – 9:30                  Genetics and Autoimmunity
                                    Corey Ford, MD
                                    University of New Mexico, Albuquerque, NM

9:30 – 10:00               Relating Sensorimotor Function to MRI
                                    Kathleen M. Zackowski, PhD, OT
Kennedy Krieger Institute, Baltimore, MD

10:00 – 10:30              High Dose Cyclophosphamide in Multiple Sclerosis
                                    Chitra Krishnan, MHS
                                    Douglas A. Kerr, MD, PhD
                                    Johns Hopkins University, Baltimore, MD

10:30 – 10:45              Refreshment Break

10:45 – 11:15              Hematopoietic Stem Cell Transplantation in Multiple Sclerosis
James Bowen, MD
MS Center at Evergreen, Kirkland, WA.

11:15 – 11:45              Optical Coherence Tomography (OCT) and Neuroprotection
                                    Laura J. Balcer, MD
                                    University of Pennsylvania, Philadelphia, PA

12:00 - 1:00                 Lunch

Afternoon Session

 

1:00 – 1:30                  Neurorehabilitation – Now and the Future
                                    Reggie Edgerton, PhD
                                    UCLA

1:30 – 2:00                  Neurodegeneration and Neuroregeneration – The Future
Douglas A. Kerr, MD, PhD
Johns Hopkins University, Baltimore, MD
                                   
2:00 – 4:00                  A Moderated Discussion
Sanford J. Siegel, PhD, President TMA
Chitra Krishnan, MHS, Johns Hopkins University

6:00 – 9:00                  Dinner and Keynote
                                    Presentation of TMA Distinguished Service Award

Please note, this program is subject to change

 

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