Home / Agenda / 2017 MDF Annual Conference

Thursday, September 7

  • Registration Session
    Thursday Registration
    Hyatt Regency San Francisco
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    • 3:00pm - 7:00pm

      The registration table is located in the Ballroom Foyer on the ground level.

    7:00 pm
  • Social Program
    First Timers' Tea
    Hyatt Regency San Francisco
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    • 4:00pm - 5:00pm

      A welcome session for first-time attendees, hosted by MDF Board Member David Herbert, and MDF Community Members Erica Kelly and Leslie Lynch. Learn tips and tricks for having a successful conference experience from the experts and pick up a session cheat sheet. Light snacks and beverages will be served.

    5:00 pm

Friday, September 8

  • 7:30 am
    Breakfast
  • Registration Session
    Friday Registration
    Hyatt Regency San Francisco
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    • The registration table is located in the Ballroom Foyer on the ground level.

    5:30 pm
  • Programs
    Breakout Sessions: Selecting High-quality Caregivers; DM and Cardiac Care
    Hyatt Regency San Francisco
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    • 10:00am - 10:50am

      Selecting High-quality Caregivers
      Barry Cohen, Ph.D.

    • 10:00am - 10:50am

      DM and Cardiac Care: New Research and Developments
      Matthew Wheeler, M.D., Ph.D., Stanford University

    10:50 am
  • Programs
    JOA Program
    Kathleen Austria, RTC, CTRS, Barry Cohen, Ph.D.
    Hyatt Regency San Francisco
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    • A program designed specifically for Juvenile-Onset Adults, facilitated by MDF community members Kathleen Austria, RTC, CTRS and Barry Cohen, Ph.D.

    3:00 pm
  • Vendor Session
    Friday Research & Vendor Fair
    Hyatt Regency San Francisco
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    • Interact with researchers, vendors and community members from around the country. Learn about current research and gather DM-related materials. The research and vendor fair tables are located next to registration in the Ballroom Foyer.

    2:00 pm
  • Programs
    Breakout Sessions: Congenital Family Roundtable; Male Caregivers; Orthotics and Mobile Devices
    Hyatt Regency San Francisco
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    • 11:00am - 11:50am

      Congenital Family Roundtable
      Facilitator TBD

    • 11:00am - 11:50am

      Male Caregivers Support Group
      Facilitator TBD

    • 11:00am - 11:50am

      Orthotics & Mobile Devices
      Tina Duong, Ph.D., PT, Stanford University

    11:50 am
  • 12:00 pm
    Lunch
  • Programs
    Support Group Facilitators Lunch
    Paul Formaker
    Hyatt Regency San Francisco
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    • A closed meeting for MDF Support Group Facilitators, hosted by MDF Program Director Paul Formaker.

    1:00 pm
  • Programs
    Breakout Sessions: The DM2 Patient Experience; DM Nutrition; Help for DM Parents
    Hyatt Regency San Francisco
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    • 1:00pm - 1:50pm

      The DM2 Patient Experience
      Panelists TBD

    • 1:00pm - 1:50pm

      DM Nutrition: Debunking Myths and Developing Eating Strategies
      Rebecca Hurst-Davis MS, RD, CSP, CD, CNSCR

    • 1:00pm - 1:50pm

      Help for DM Parents: Educational Tools and Resources for Ages 1 to 21
      Laura Kaloi, McKeon Group

    1:50 pm
  • Vendor Session
    Accessing State and Federal Resources: Expert Workshop
    Stephen Dale, Dale Law Firm, PC, Daniel Fortuño, Benefits Education Center
    Hyatt Regency San Francisco
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    • This first-ever MDF Annual Conference program will allow attendees to meet and speak with professionals hosting tables from the Social Security Administration, Centers for Medicare & Medicaid Services and other assistance organizations. This is your chance to learn from the experts.

      Learn more about the session

    4:00 pm
  • Programs
    Breakout Sessions: Female Caregivers; DM 101; Becoming a DM Advocate
    Hyatt Regency San Francisco
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    • 2:00pm - 2:50pm

      Female Caregivers Support Group
      Facilitator TBD

    • 2:00pm - 2:50pm

      DM 101: Getting a Handle on the Basics
      Johanna Hamel, M.D., University of Rochester

    • 2:00pm - 2:50pm

      Becoming a DM Advocate
      Kevin Brennan, Faegre, Baker, Daniels

    2:50 pm
  • Programs
    Chair Tap Dance Lesson
    Mindy Kim
    Hyatt Regency San Francisco
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    • Bring your dancing shoes and join community member Mindy Kim in a fun, accessible dance lesson.

    4:15 pm
  • 4:30 pm
    Break
  • 5:30 pm
    Opening Reception
  • Social Program
    Opening Reception, Poster Session & Vendor Showcase
    Hyatt Regency San Francisco
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    • Hors d'oeuvres will be served and a cash bar will be available. The reception takes place in the Main Ballroom. During the reception, spend a few minutes browsing through the Research & Vendor Showcase in the Ballroom Foyer, and talk with MDF Fellows about their current research via the concurrent Poster Session.

    7:30 pm

Saturday, September 9

  • 8:00 am
    Breakfast
  • Registration Session
    Saturday Registration
    Hyatt Regency San Francisco
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    • The registration table is located in the Ballroom Foyer on the ground level.

    5:00 pm
  • General Session
    IDMC-11 Awards Presentation
    Hyatt Regency San Francisco
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    • Awards will be presented for best poster and oral presentations, and other research achievements. This is a joint IDMC-11/MDF Annual Conference program.

    9:45 am
  • Vendor Session
    Saturday Research & Vendor Fair
    Hyatt Regency San Francisco
    Click for Details
    • Interact with researchers, vendors and community members from around the country. Learn about current research and gather DM-related materials. The research and vendor fair tables are located next to registration in the Ballroom Foyer.

    3:00 pm
  • 9:45 am
    Coffee Break
  • General Session
    Bringing the Patient Voice to CNS-Targeting Drug Development in Myotonic Dystrophy
    James Valentine, J.D.
    Hyatt Regency San Francisco
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    • In response to requests from drug development professionals to help identify CNS endpoints appropriate for the regulatory review process, and to accelerate the development of CNS-targeting DM therapies, IDMC-11 and the Myotonic Dystrophy Foundation will jointly host a multi-panel discussion to inform the development of patient-centric CNS endpoints for DM therapies. The meeting format will mirror the very successful Patient-Focused Drug Development (PFDD) meeting hosted by MDF with the FDA in September 2016. Panels will be seated with people affected by DM, and caregivers. The session will be moderated by James Valentine, J.D., who also moderated the September 2016 PFDD meeting.

      The session will begin with a presentation on outcome measure development to help the lay audience understand the importance and role of endpoints in drug development and approval, and frame the goals for the session. Panel presentations will then be followed by moderated audience discussion and a presentation from an industry representative regarding possible future DM CNS endpoints, and CNS endpoints used in other neurological diseases that might inform upcoming efforts in DM.

      A publication summarizing the workshop is also planned.

      Learn more about the session

    1:00 pm
  • General Session
    Bringing the Patient Voice to CNS-Moderated Lunch Discussion
    Hyatt Regency San Francisco
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    • Assigned seating for discussion among families, industry and academic researchers that will include feedback and a report out at the end of lunch. Lunch will be served.

    1:00 pm
  • 12:00 pm
    Lunch
  • Programs
    Breakout Sessions: DM Sleep Disorders; DM, Cancer and Aging; DM and Mental Health
    Hyatt Regency San Francisco
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    • 1:00pm - 1:50pm

      DM Sleep Disorders: Updated Research and Management Strategies
      John Day, M.D., Ph.D., Stanford University

    • 1:00pm - 1:50pm

      DM, Cancer and Aging: What Families Should Know
      Shahinaz Gadalla M.D., Ph.D., National Cancer Institute; Mark Greene, M.D., National Institutes of Health

    • 1:00pm - 1:50pm

      DM and Mental Health
      Melissa Dixon, Ph.D., University of Utah

    1:50 pm
  • Programs
    Breakout Sessions: MDF Research; Dental Care; DM2 Research & Pain Management
    Hyatt Regency San Francisco
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    • 2:00pm - 2:50pm

      MDF Research: What's Been Accomplished, What's Next?
      John Porter, Ph.D., MDF

    • 2:00pm - 2:50pm

      DM and Dental Care: The Neglected Health Risk
      Darci Trill, RDHAP, Golden Scalers

    • 2:00pm - 2:50pm

      DM2: New Research and Pain Management
      Benedikt Schoser, M.D., Ludwig-Maximilians University of Munich

    2:50 pm
  • General Session
    Beyond General Anesthesia: Opiates and Pain Medications
    Jacinda Sampson, M.D., Ph.D., Stanford University
    Hyatt Regency San Francisco
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    • Jacinda Sampson, M.D., Ph.D. details the risks associated with anesthesia and myotonic dystrophy, followed by an overview on the appropriate use of opiates for pain relief.

    3:30 pm
  • General Session
    Expanding the Pipeline: Industry Updates on Drug Development
    Matthew Disney, Ph.D., Scripps Research Institute, Joseph Horrigan, M.D., AMO Pharmaceuticals, Laurence Mignon, Ph.D., Ionis Pharmaceuticals
    Hyatt Regency San Francisco
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    • Four presentations from pharmaceutical companies currently working on DM-related therapies.

    4:50 pm
  • General Session
    Conference Q&A
    Hyatt Regency San Francisco
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    • A panel of experts will answer community member questions that have been submitted throughout the weekend.

    5:15 pm
  • 5:45 pm
    Closing Dinner Party and Performance
  • Social Program
    Closing Finale and Dinner Party: Live Performance with Eric Hutchinson
    Hyatt Regency San Francisco
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    • A live performance from musician Eric Hutchinson will kick off the closing dinner party. Dancing to follow.

    7:30 pm

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