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2013 National Conference

The National Conference combines the Foundation's annual business meeting with the opportunity for patients and their families to learn more about the disease and its treatment, current research, and tips to learn 'how to live' with MG from experienced medical professionals and fellow patients.

The 2013 National Conference was held at the Intercontinental at Doral Miami Hotel. Stay tuned for videos of the confernce presentations.

MGFA National Conference Agenda
May 8-10, 2013

Intercontinental Doral at Miami

Wednesday May 8^th

5:30 PM – 7:30 PM Welcome Reception

Thursday May 9^th

7:30 AM Relaxation/Mind Body Exercises

8:00 AM – 9:00 AM Continental Breakfast

9:00 AM – 9:30AM Meeting of the General Assembly/State of the Foundation

(voting and non-voting members)

Mr. Samuel Schulhof, Chair
Myasthenia Gravis Foundation of America, Inc.

9:30 AM - 10:00 AM               Patient Registry
                                              Dr. Henry Kaminski
                                              Chair, Dept. of Neurology
                                              George Washington University
                                              School of Medicine and Health Sciences

10:00 AM – 10:15 AM Morning Break

10:15 AM – Noon Continued General Assembly

(voting members only)

Runs concurrent with MG101 and Tell Your Stories

Basic Track

10:15 AM – 11:30 AM MG101-The Basics

Neil C. Porter, MD

Assistant Professor, Department of Neurology

University of Maryland

All Others Track

10:15 AM- 11:00 AM Tell Your MG Stories - Patients

Jasmine Snow, young professional adult with MG, will share her story

MG onset at an inconvenient time in her young life -- the beginning of a fast-

paced magazine editor career. Jasmine will share how she "powers

through the tough days" and stays in the positive

11:00 AM - Noon Tell Your MG Stories - Caregivers

Mary Beth Snow, Jasmine's mother, will share her story about learning that

her young adult daughter had MG. Ms Snow will share her thoughts on

caregiving for a child -- how to be supportive of MG management and

treatment decision-making, yet leaving space for independence and

initiative.

Noon – 1:00 PM Lunch

1:00 PM – 1:30 PM Keynote Speaker - Telling my story! Taking charge…

and charging forward!"

                                               Lisa Gigliotti, J.D.
                                               Attorney, Administrative Law Judge, and Author
                                              Coraggio! With Courage I Can Book Series

East Lansing, Michigan

1:30 PM – 2:30 PM Future Treatment Options for MG: What’s on the Horizon

Don Sanders , MD

Division of Neurology

Duke University Medical Center

2:30 PM – 3:00 PM A Review of the International Symposium

R. L. Ruff, MD, PhD

3:00 PM -3:15 PM Break

3:15 PM – 4:15 PM Three Concurrent Tracks – Interactive Round Table Discussions

· Mature MG Patients

Join Robert Ruff, MD, Charlene Hafer-Macko, MD and Richard

Macko, MD discussing topics such as sex, relationships, exercise;

specific to the mature adult.

· Young Adults

Engineer Mike Ursic, Attorney Jennifer Faucett, and Master's Degree

student Brittney Foley gather together with other adults to share

common questions and experiences unique to a young adult with MG;

including dating, exercise, self esteem, and juggling medical bills

among starting salaries and student loans.

                                                      Parenting a Child with MG
                                                         Join Pediatric Neurologist Dr. Nancy Kuntz and Sue Southerton
                                                         mother of a young daughter with MG to discuss for parents such
                                                        as diagnosis and treatment decision making and how to normalize
                                                         a child's life with chronic disease.

6:30 PM Awards Dinner

Robert M. Pascuzzi, MD

Chairman Department of Neurology

Indiana University School of Medicine

Friday May 10th

7:30 AM – 8:00 AM Exercise (bring comfortable clothes and shoes)

Wilma Koopman/Charlene Hafer-Mack/Richard Macko

8:00 AM – 9:00 AM Continental Breakfast

· June Awareness Round Table Discussion -- Tommy Santora and Jasmine Snow

                                                           "How to Energize Your Campaign and Get Media Attention" --
                                                          Join a discussion during breakfast about how to best use
                                                          the remaining weeks before June to get your message to the
                                                           public. Receive tips and share your ideas and successes.

9:00 AM – 9:45 AM Quality of Life – Introduction of Smartphone App

Ted M. Burns, MD
Department of Neurology

University of Virginia

9:45 AM – 10:00 AM Break

10:00 AM – 10:45 AM Hope, Coping and Well-Being in Ambulatory Adults with

Myasthenia: A Pilot Study

Wilma Koopman, RN(EC), MScN, ACNP

Nurse Practitoner, London Health Sciences Centre

10:45 AM – 11:00 AM Break

11:00 AM – 11:45 AM MG Research Update

                                              Gil I. Wolfe, MD, FAAN
                                              Irvin and Rosemary Smith Professor and Chair
                                              Dept. of Neurology/Jacobs Neurological Institute
                                              State Univ of New York at Buffalo School of
                                              Medicine and Biomedical Sciences
                                              Buffalo General Medical Center

11:45 AM – 12:30 To be in a Clinical Trial or not to be in a Clinical Trial

Jurgen Venitz, MD, PhD

Associate Professor, Department of Pharmaceuticals

School of Pharmacy

Medical College of Virginia Campus of Virginia Commonwealth

University

12:30 PM– 2:00 PM Lunch

2:00 PM – 2:30 PM                Travel and MG
                                               Nancy Law
                                               Executive Vice President of programs and services
                                               MS Society

2:30 PM – 2:45 PM Afternoon Break

2:45 PM – 3:30 PM Current Treatments

Michael Benatar, MBChB, Dphil

University of Miami

3:30 PM – 4:30 PM Ask the Professionals Panel

· Donald B. Sanders, MD

· Mike Benatar, MD

· Robert M. Pascuzzi, MD

· Robert L. Ruff, MD

· Wilma Koopman,RN(EC), NP

· Charlene Hafer-Macko, MD

4:30 PM – 4:45 PM Closing Remarks

Samuel Schulhof, Chair

Myasthenia Gravis Foundation of America, Inc.

6:00PM Miami Walk

2013 National Conference

MGFA National Conference Agenda May 8-10, 2013

Intercontinental Doral at Miami

MGFA National Conference Agenda
May 8-10, 2013