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2019 MDF Annual Conference Agenda

Tuesday, March 7

  • 7:00 pm to 8:00 pm
    Making do with Nothing

Tuesday, October 31

  • 7:45 pm to 8:00 pm
    Costume Party

Friday, September 14

  • 7:30 am to 8:00 am
    Breakfast (Professionals)
  • 8:00 am to 9:00 am
    Drug Development Roundtable - Natural History Data Updates (Professionals)
  • 8:30 am to 5:30 pm
    Friday Registration
  • 9:00 am to 9:20 am
    Population-Based Prevalence Study in DM1 & DM2 (Professionals)
  • 9:00 am to 9:50 am
    Support Group Facilitators Breakfast (Closed)
  • 9:20 am to 11:00 am
    Current Advances in DM2 Research (Professionals)
  • 10:00 am to 10:50 am
    First Timers' Tea
  • 11:00 am to 11:10 am
    Coffee Break (Professionals)
  • 11:10 am to 12:30 pm
    Molecular & Imaging Biomarker Development for DM Studies (Professionals)
  • 12:30 pm to 1:00 pm
    Conference Welcome
  • 12:30 pm to 1:30 pm
    Lunch (Professionals)
  • 1:00 pm to 1:50 pm
    Breakout Sessions: Congenital Community Panel; The DM2 Patient Experience Community Panel; Gut Instincts: GI Symptom Management
  • 1:00 pm to 4:50 pm
    JOA Program
  • 1:00 pm to 3:50 pm
    Research & Vendor Showcase
  • 1:30 pm to 1:50 pm
    Clinical Efficacy Trial of Mexiletine for DM1 (Professionals)
  • 1:50 pm to 3:00 pm
    DM Disease Burden: Results from Recent Research (Professionals)
  • 2:00 pm to 2:50 pm
    Breakout Sessions: DM 101: Getting a Handle on the Basics; Breath Easy: Pulmonary Symptom Management; Male Caregivers Community Panel; Female Caregivers Community Panel
  • 3:00 pm to 3:50 pm
    Poster Session
  • 3:00 pm to 4:00 pm
    Poster Session (Professionals)
  • 4:00 pm to 4:50 pm
    Breakout Sessions: Patient Report Out on Cannabis for Symptom Management; Staying Strong: DM and Exercise; Becoming a DM Advocate: Community Update and Training
  • 4:00 pm to 5:00 pm
    Gene Editing and Therapy Development (Professionals)
  • 5:00 pm to 5:50 pm
    Break
  • 5:00 pm to 5:50 pm
    Chair Tap Adaptive Dance Class
  • 6:00 pm to 8:00 pm
    Opening Reception
  • 7:00 pm to 8:00 pm
    DMCRN Dinner Meeting (Site PIs, PTs, CRCs only, Professionals)

Saturday, September 15

  • 7:00 am to 8:50 am
    Breakfast
  • 8:00 am to 5:00 pm
    Saturday Registration
  • 9:00 am to 3:20 pm
    Research & Vendor Showcase 2
  • 9:00 am to 2:20 pm
    JOA Program 2
  • 9:00 am to 10:50 am
    Living with DM: Patients Report on Changes Over Time
  • 11:00 am to 11:50 am
    Strategies for Managing Progression
  • 12:00 pm to 12:50 pm
    DM2 Research Update Lunch
  • 12:00 pm to 12:50 pm
    Lunch
  • 1:00 pm to 2:20 pm
    Consensus-based Care Recommendations: What Do They Mean for You?
  • 2:20 pm to 2:40 pm
    Break
  • 2:40 pm to 3:15 pm
    Accelerating the Search for Therapies: What's Happening, What's Next
  • 3:15 pm to 3:30 pm
    Conference Challenge
  • 3:40 pm to 4:50 pm
    Industry Updates on Drug Development
  • 5:00 pm to 5:15 pm
    Conference Q&A
  • 5:15 pm to 6:00 pm
    Break - No Host Cocktail Hour
  • 6:00 pm to 8:00 pm
    Closing Dinner, Line Dancing Class & Dance Party

Friday, September 13

  • 9:00 am to 5:00 pm
    Friday Registration; Lounge and Coffee
  • 10:00 am to 7:30 pm
    First Timers' Tea; Juvenile-onset Adult (JOA) Program Friday
  • 11:00 am to 12:00 pm
    Adaptive Chair Yoga
  • 12:00 pm to 1:00 pm
    Break
  • 12:00 pm to 5:00 pm
    Research & Vendor Showcase
  • 1:00 pm to 1:45 pm
    Conference Welcome
  • 2:00 pm to 4:00 pm
    Female Caregivers Roundtable; Going to School with Myotonic Dystrophy: Understanding Special Education & I.D.E.A.; Emergency Preparedness; DM101: Understanding the Disease Basics
  • 3:00 pm to 4:00 pm
    Congenital Caregivers Roundtable; Myotonic Dystrophy & the World of Work; Grassroots Advocacy-MDF Needs You!
  • 4:00 pm to 5:00 pm
    Cardiac Considerations for DM2; Male Caregivers Roundtable; Adaptive Chair Yoga; DM Genetics & Family Planning
  • 5:00 pm to 5:30 pm
    Break
  • 5:30 pm to 7:30 pm
    Welcome Reception & Research Poster Session

Saturday, September 14

  • 7:00 am to 8:00 am
    Breakfast
  • 8:00 am to 3:00 pm
    Research & Vendor Showcase II
  • 9:00 am to 6:00 pm
    Juvenile-onset Adult (JOA) Program Saturday
  • 9:00 am to 5:00 pm
    Saturday Registration; Occupational Therapy: the Latest Tools & Resources; Financial Planning & DM; DM Behavioral & Mental Health: Understanding Symptoms & Management Strategies; Listening Room
  • 10:00 am to 12:00 pm
    Palliative Care: Improving Quality of Life at Every Stage; Pain & DM2: Updated Information on Symptoms & Coping Strategies; Creating Your Clinical Care Team; Exercise, Nutrition & Speech: Enhancing Functional Ability
  • 11:00 am to 12:00 pm
    Mindfulness as a Disease Management Strategy, DM2 Research, Sleep
  • 12:00 pm to 1:00 pm
    Lunch
  • 1:00 pm to 2:00 pm
    Cardiac General Session
  • 2:00 pm to 3:20 pm
    Patients Report Out: Living with DM Over 50
  • 3:20 pm to 3:30 pm
    Conference Challenge
  • 3:30 pm to 5:00 pm
    Industry Updates and Q&A
  • 5:00 pm to 6:15 pm
    Cocktail Hour
  • 6:15 pm to 8:30 pm
    Closing Dinner & Dance Party

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