AGENDA. Sunday, March 16, Registration (Crystal Ballroom Foyer) Keynote Speaker: Charles Thornton, MD (Crystal Ballroom)

Transcription

1 AGENDA Start 4:00 End Sunday, March 16, 2014 Registration (Crystal Ballroom Foyer) 6:00 6:30 Keynote Speaker: Charles Thornton, MD 6:30 6:45 8:00 7:45 Opening Reception Monday, March 17, 2014 fast - General (Regency B) 8:00 8:45 8:45 9:05 fast Managing an MDA Clinic: Challenges and Solutions Sarah Evans, MD Meganne Leach, MSN, SPRN, PPCNP-BC Kathleen Smart (Comiskey Room) fast LGMDs Navigating the Diagnostic Odyssey Matthew Wicklund, MD (Regency A) Welcoming Remarks and Opening Keynotes DIAGNOSTIC STRATEGIES IN NEUROMUSCULAR DISEASE Next Generation Genetic Testing What can it tell us in muscle and nerve disease? Matthew Harms, MD 1 P a g e

2 9:05 10:15 10:15 10:45 10:45 11:05 11:05 11:25 11:25 12:00 Panel Discussion: Optimizing Care with Genetic Counseling When and how to handle unexpected results. Matthew Harms, MD Madhuri Hegde, PhD, FACMG Carly Siskind, MS, LCGC Muscle Imaging - MRI Ami Mankodi, MD Muscle & Nerve Imaging Ultrasound Jahannaz Dastgir, DO 12:00 1:00 Lunch 1:10 1:30 1:30 1:50 1:50 2:10 2:10 2:40 DISEASE MANAGEMENT Parallel Session 1A: Cardiac & Pulmonary Session Cardiac Issues in Early Stage Neuromuscular Disease Elizabeth McNally, MD, PhD Cardiac Issues in Late Stage Neuromuscular Disease: Advanced heart failure management Savitri Fedson, MD Electrophysiology Management Joshua Moss, MD Pulmonary Issues in Neuromuscular Disease Noah Lechtzin, MD, MHS 2 P a g e

3 2:40 3:10 1:15 2:05 2:10 3:10 3:10 3:40 Clinical Genetic Testing from the Laboratory s Point of View Dev Batish, PhD, FACMG Madhuri Hegde, PhD, FACMG Thomas Winder, PhD, FACMG (Water Tower Room) Parallel Session 1B: Allied Health Professionals Five Things Every MDA Clinic Social Worker Should Know Rebecca Axline, LCSW Marie Ritzo, MSW (Gold Coast Room) Clinic Coordination Strategies Rebecca Axline, LCSW Vanessa Battista, RN, MS, DPNP, CCRC Melissa Gibbons, MS, CGC Lauren Webb Exercise and Neuromuscular Disease Through the Lifetime Tina Duong, MPT Jacqueline Montes, PT, EdD, NCS Parallel Session 2A: Hands-on Pulmonary Session (Participants will be divided into five groups and groups will rotate stations every 25 minutes. Group assignments provided at registration.) 3:45 4:10 Station 1 Station 2 Station 3 Station 4 Station 5 4:10 4:35 4:35 5:00 5:00 5:25 5:25 5:50 Cough Assist Noah Lechtzin, MD, MHS (Columbian Room) Therapy Vest and Metaneb Venessa Holland, MD, MPH, PA (Soldier Field Room) NIV Device Amy Guralnick, MD (Picasso Room) Diaphragm Pacing John M. Coleman, III, MD (Wrigley Room) Trach Care in the Home Lisa Wolfe, MD (Haymarket Room) 3:45 4:15 Parallel Session 2B: Rehabilitation Robotics and Management Strategies to Improve Upper Extremity Function Craig McDonald, MD 3 P a g e

4 4:15 4:35 4:35 4:55 4:55 5:15 5:15 5:45 Augmentative Communication in Neuromuscular Disease Nanette Joyce, DO Exercise in Myopathies Craig McDonald, MD Chronic Pain in Neuromuscular Disease Gregory Carter, MD 6:00 8:00 Poster Session 6:45 7:45 Tuesday, March 18, 2014 fast - General (Regency B) 8:00 8:30 fast Expanded Access to Investigational Therapeutics Abby Bronson, MBA Timothy Miller, MD (Regency A) Opening Remarks 8:30 9:00 Standards of Care for Neuromuscular Disease Julie Bolen, PhD, MPH 4 P a g e

5 9:00 10:00 10:00 10:30 10:30 12:00 12:15 1:15 1:20 1:40 ETHICAL ISSUES AND END OF LIFE CARE Panel Discussion: Ethical Issues in Genetic Testing Lisa Dellefave-Castillo, MS Matthew Harms, MD Lisa Kinsley, MS Sara Krider Carly Siskind, MS, LCGC Panel Discussion: Palliative and End-of-Life Care Vanessa Battista, RN, MS, DPNP, CCRC Jennifer Hwang, MD, MHS Dorothy Shuler, BA, MS Lunch BEST PRACTICES IN NEUROMUSCULAR DISEASE Parallel Session 3A: Specialized Care Parallel Session 3B: What s New in Managing..... Women s Health Emma Ciafaloni, MD ALS Ericka Simpson, MD 1:40 2:00 2:00 2:20 2:20 2:50 Sexuality Carol Gill, PhD Implementation of Depression Screening using the Patient Health Questionnaire to Identify At-Risk Individuals Kim Marben, MSN, RN, CPN Adult Myasthenia Gravis Gil Wolfe, MD, FAAN Pediatric Myasthenia Gravis Susan Iannaccone, MD, FAAN 2:50 3:20 5 P a g e

6 3:20 3:40 3:40 4:10 4:10 4:30 4:30 5:00 Parallel Session 3A: Specialized Care (Continued) Behavioral and Emotional Health in Neuromuscular Disease Danielle Sheypuk, PhD Navigating a Successful Transition from Adolescence to Adulthood Peter Scal, MD, MPH Addressing the Needs of Siblings of Children with Disability Don Meyer Parallel Session 3B: What s New in Managing..... (Continued) Congenital Myopathies/Dystrophies Carsten Bonnemann, MD Charcot Marie Tooth Disease Michael Shy, MD Survey to Assess Fall History and Balance Confidence in Individuals with Myotonic Dystrophy Type 1 Katy Eichinger, PT, DPT, NCS 6:00 7:30 MDA Fily Forum 6:45 7:45 Wednesday, March 19,2014 fast - General (Regency C & D) fast MDA Neuromuscular Disease Registry Jodi Wolff, MSSW (Regency A & B) 8:00 8:30 8:30 8:50 8:50 9:10 Opening Remarks & Poster Awards THERAPEUTICS AND CLINICAL TRIALS Emerging Therapeutic Approaches to Neuromuscular Disease John Day, MD, PhD Progress Toward Molecular-Based Therapies for Neuromuscular Disease Jerry Mendell, MD 6 P a g e

7 9:10 9:30 9:30 9:50 9:50 10:10 10:10 10:30 10:30 10:50 10:50 11:10 11:10 11:30 11:30 11:50 11:50 12:20 Stem Cell Treatment for ALS Jonathan Glass, MD Update on ACT DMD: Phase 3 Trial of Ataluren in nmdmd Robert J. Spiegel, MD, FACP Update on the Eteplirsen Muscular Dystrophy Progr Ed Kaye, MD Finding the Optimum Corticosteroid Regimen for Duchenne Muscular Dystrophy (For DMD) Emma Ciafaloni, MD Twelve Week Progressive Resistance Training in Children with Spinal Muscular Atrophy Kristin Krosschell, PT, DPT, MA, PCS Tirasemtiv (CK ), a Fast Skeletal Muscle Troponin Activator for the Potential Treatment of Patients with Amyotrophic Lateral Sclerosis (ALS) Jinsy Andrews, MD, MSc Should ALS Centers offer Diaphragmatic Pacing? Deborah Gelinas, MD 12:30 Lunch & Departures 7 P a g e