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2018 Duchenne Clinician Conference Presentations

2018 Duchenne Clinician Conference

PPMD's Duchenne Clinician Conference is designed for healthcare professionals and clinical researchers. Our 2018 conference centered around: 1) presenting best practices in care and treatment of patients with Duchenne muscular dystrophy; 2) providing updates on the most promising near and long term cutting-edge therapies; and 3) creating networks of interprofessional colleagues for continued support and work in the field, which is vital to advances in treatment and care of Duchenne, and contributes to the ‘hub and spoke’ model of care.

Agenda topics and presentations from this conference may be found below.

  • Overview of Duchenne and Comprehensive Duchenne Care
    Kathi Kinnett, MSN, APRN
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  • The Importance of Genetics in Duchenne
    Lee Sweeney, PhD
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  • Care Coordination: An Advanced Practice Perspective
    Alison Ballard, RN, CPNP
    Download PDF

  • New (and Old) Corticosteroid News
    Anne Connolly, MD
    Download PDF

  • Corticosteroids and an Overview of Neuromuscular Care
    Edward C. Smith, MD
    Download PDF

  • Efforts in Newborn Screening
    Annie Kennedy
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  • Pulmonary Testing for the Duchenne Muscular Dystrophy Population
    Jane B. Taylor, MD, MSCR, FAAP
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  • Bone Health and Duchenne Muscular Dystrophy
    Sara DiVall, MD
    Download PDF

  • Management of GI Issues in Duchenne
    Kent C. Wiliams, MD
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  • The Heart is a Muscle Too! The Cardiomyopathy in Duchenne Muscular Dystrophy
    Linda Cripe, MD
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  • Psychology of Duchenne: Learning Behavior Muscle and Brain
    Jos Henricksen, PhD
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  • Evaluating Learning and Obtaining Educational Resources
    Jill Castle, Med
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  • New ICD Codes for Duchenne/Becker Muscular Dystrophy
    Annie Kennedy
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  • Caring for a Multi-Lingual Population:  Challenges and Resources
    Emmanuelle Tiongson, MD and Ashley Niederhauser, LCSW
    Download PDFs: Part 1 and Part 2

  • Dental and Swallowing Issues
    Elizabeth Vroom, DDS
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  • Puberty and Growth in Duchenne Muscular Dystrophy
    Sara DiVall, MD
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  • Nutrition & Supplements in Duchenne Muscular Dystrophy
    Davi Mazala, PhD
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  • Psychosocial and Mental Health Care
    Mary K. Colvin, PhD, ABPP
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  • Lifelong Occupational Therapy Needs
    Heather Simpson, MOT, OTR/L
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  • PPMD Resource Section
    Ryan Fischer
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  • Lifelong Physical Therapy Needs
    Claudia Senesac, PT, PhD, PCS
    Download PDF

  • Planning for Transition to Adult Care & Living
    Christina Trout, MSN, RN
    Download PDF

  • The Duchenne Registry
    Ann Martin, CGC
    Download PDF

  • Adult Care Model
    Kim Marben, DNP, MSN, RN, CPN
    Download PDF

  • Caring for Duchenne Carriers
    Rachel Schreader, MS, RN, CPNP-PC
    Download PDF

  • Characterization of Clinical Skeletal and Cardiac Impairment in Carriers of DMD and BMD
    Eric Camino, PhD
    Download PDF

  • Palliative Care: When Should the Palliative Care Team Be Included in the Neuromuscular Team?
    Vanessa Batista, RN, MS, CPNP
    Download PDF

  • Emergency Care and Resources
    Kathi Kinnett, MSN, APRN
    Download PDF

  • New Developments and Novel Therapies
    Lee Sweeney, PhD
    Download PDF

  • Clinical Trial Decision Making: Helping Families Navigate the Current Clinical Trial Landscape
    Edward C. Smith, MD and Ann Martin, CGC
    Download PDFs: Part 1 and Part 2
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