Home / Agenda / 2018 Mdf Annual Conference

Friday, September 14

  • Registration Session
    Friday Registration
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    • Check in and receive your free conference bag! (Includes bracelets, a pen, a program, and networking cards)

    5:30 pm
  • Social Program
    Support Group Facilitators Breakfast (Closed)
    MDF Program Director
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    • A closed meeting for MDF Support Group Facilitators, hosted by the MDF Program Director. Brunch will be provided.

    9:50 am
  • Social Program
    First Timers' Tea
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    • A welcome session for first-time attendees. Learn tips for having a successful conference experience from MDF Board members, support group facilitators and experienced attendees and pick up a session cheat sheet. Light snacks and beverages will be served.

    10:50 am
  • Programs
    Conference Welcome
    Molly White, CEO, MDF
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    • The opening session will include a welcome and Care and Cure progress update from MDF CEO Molly White.

    1:00 pm
  • Programs
    Breakout Sessions: Congenital Community Panel; The DM2 Patient Experience Community Panel; Gut Instincts: GI Symptom Management
    Leila Neshatian, MD, MSc, Stanford University
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    • Congenital Community Panel
      Facilitator TBD: Facilitated support group discussion for caregivers of congenital and childhood-onset myotonic dystrophy patients.

    • The DM2 Patient Experience: Community Panel
      Facilitator TBD: DM2 patients and caregivers will discuss symptom burden, unique aspects of the DM2 disease genotype and management strategies.

    • Gut Instincts: GI Symptom Management
      Leila Neshatian, MD, MSc, Stanford University. Dr. Neshatian will provide an overview of how DM can affect the GI tract, from swallowing issues to gut and processing concerns, and how affected individuals can manage these symptoms.

    1:50 pm
  • Programs
    JOA Program
    Barry Cohen, PhD, Diane Bade, RN, CAVS
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    • A program designed specifically for juvenile-onset adults, facilitated by MDF community members Barry Cohen, Ph.D and Diane Bade, RN, CAVS.

    4:50 pm
  • Poster Session
    Research & Vendor Showcase
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    • Visit the Research & Vendor Showcase in the Governor's Lobby to talk to researchers about current studies, and talk with industry professionals, academic researchers.

    3:50 pm
  • Programs
    Breakout Sessions: DM 101: Getting a Handle on the Basics; Breath Easy: Pulmonary Symptom Management; Male Caregivers Community Panel; Female Caregivers Community Panel
    Valeria Sansone, MD, University of Milan, NEMO Center, Nicholas Johnson, MD, University of Utah
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    • Male Caregivers Support Session
      Facilitator TBD: Closed session for male caregivers

    • Female Caregivers Support Session
      Facilitator TBD: Closed session for female caregivers

    • DM 101: Getting a Handle on the Basics
      Nicholas Johnson, MD, University of Utah. Session for first-time attendees and those interested in a refresher overview of DM genetics, symptom burden and management strategies.

    • Breath Easy: Pulmonary Symptom Management
      Presenter Dr. Valeria Sansone, MD: Dr. Sansone will provide an overview of how DM can affect the respiratory system and how affected individuals can manage these symptoms.

    2:50 pm
  • Poster Session
    Poster Session
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    • MDF-Wyck Fellows present their current research in a Poster Session.

    3:50 pm
  • Programs
    Breakout Sessions: Patient Report Out on Cannabis for Symptom Management; Staying Strong: DM and Exercise; Becoming a DM Advocate: Community Update and Training
    Katy Eichinger, PT, DPT, NCS, University of Rochester, Kevin Brennan, Faegre Baker Daniels
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    • Patient Report Out on Cannabis for Symptom Management
      Facilitator TBD: Many MDF community members and some DM clinical professionals report benefit from the use of medical cannabis to treat DM symptoms, including pain, anxiety, sleep issues and myotonia. In this moderated session, people living with DM will share their experiences using medical cannabis via audience feedback on a specific set of questions.

    • DM and Exercise
      Presenter Dr. Katy Eichinger, PhD: Dr. Eichinger will discuss current research and science on exercise to manage DM symptoms and improve quality of life now. An ongoing favorite at the MDF Annual Conference.

    • Becoming a DM Advocate: Community Training
      Instructor Kevin Brennan: Join MDF public policy consultant and advocacy expert Kevin Brennan to learn you can help raise the profile of myotonic dystrophy with members of Congress and advocate for important research and care legislation.

    4:50 pm
  • General Session
    Chair Tap Adaptive Dance Class
    Mindy Kim
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    • Adaptive Dance
      Instructor Mindy Kim: Bring your dancing shoes and join community member Mindy Kim in a fun dance lesson specifically designed for people living with myotonic dystrophy.

    5:50 pm
  • 5:00 pm
    Break
  • Social Program
    Opening Reception
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    • Join community members and DM professionals at the opening reception, taking place in the beautiful Water's Edge Bar, located at water level in the Delta Pavillion among lush plants and waterfalls. Hors d'oeuvres will be served and a cash bar will be available.

    8:00 pm

Saturday, September 15

  • 7:00 am
    Breakfast
  • Registration Session
    Saturday Registration
    Click for Details
    • Check in and receive your free conference bag! (Includes bracelets, a pen, a program, and networking cards)

    5:00 pm
  • General Session
    Living with DM: Patients Report on Changes Over Time
    Moderator: Charles Thornton, MD, University of Rochester
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    • This interactive panel session will be similar in format to the Patient-Focused Drug Development meeting presented by MDF as a part of the 2016 MDF Annual Conference, and the CNS Endpoint Development discussion presented at the 2017 MDF Annual Conference. Panelists will discuss the disease symptom changes they have experienced living with myotonic dystrophy, followed by facilitated audience participation. This session is intended to amplify and deepen our understanding of disease changes and progression from the perspective of individuals and families living with DM.

    10:50 am
  • General Session
    JOA Program 2
    Barry Cohen, Ph.D., Diane Bade, RN, CAVS
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    • A program designed specifically for juvenile-onset adults living with DM, facilitated by MDF community members Barry Cohen, Ph.D and Diane Bade, RN, CAVS.

    2:20 pm
  • Poster Session
    Research & Vendor Showcase 2
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    • Visit the Research & Vendor Showcase in the Governor's Lobby to talk to researchers about current studies, and talk with industry professionals, academic researchers and MDF-Wyck Fellows about their current research via the concurrent Poster Session.

    3:20 pm
  • General Session
    Strategies for Managing Progression
    Cynthia Gagnon, OT, PhD, Missy Dixon, PhD
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    • Following the interactive panel discussion on myotonic dystrophy disease changes and progression over time, Dr. Cynthia Gagnon will present current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources.

    11:50 am
  • General Session
    DM2 Research Update Lunch
    Chad Heatwole, MD
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    12:50 pm
  • 12:00 pm
    Lunch
  • General Session
    Consensus-based Care Recommendations: What Do They Mean for You?
    Nicholas Johnson, MD, University of Utah, Jacinda Sampson, MD, PhD, Stanford University, Missy Dixon, PhD, University of Utah
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    • MDF has recently completed Consensus-based Care Recommendations for Adults with DM1, DM2 and congenital DM. Now we need to make sure that every clinician treating a DM patient has them and is using them – and we need your help! MDF is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Come watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.

    2:20 pm
  • 2:20 pm
    Break
  • General Session
    Accelerating the Search for Therapies: What's Happening, What's Next
    Elizabeth Ackermann, PhD
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    • Dr. Elizabeth Ackermann will report on the results of the 3-year MDF and Wyck Foundation-funded drug development acceleration effort, MDF 3.0, and introduce MDF’s new initiative, MDF 4.0, including the $1M gene editing project, the Myotonic Dystrophy Clinical Research Network study and other aggressive therapy development programs.

    3:15 pm
  • General Session
    Conference Challenge
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    3:30 pm
  • General Session
    Industry Updates on Drug Development
    Laurence Mignon, PhD, Ionis Pharmaceuticals, Matthew Disney, PhD, Expansion Therapeutics, Ranjan Batra, PhD, Locana Bio, Joseph P. Horrigan, MD, AMO Pharma Ltd.
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    • Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Moderated by Dr. Elizabeth Ackermann, MDF Chief Science Officer.

    4:50 pm
  • General Session
    Conference Q&A
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    • A panel of clinical and research experts will answer community member questions that have been submitted throughout the conference.

    5:15 pm
  • 5:15 pm
    Break - No Host Cocktail Hour
  • Social Program
    Closing Dinner, Line Dancing Class & Dance Party
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    • A seated, multi-course dinner will be followed by a live DJ and dancing to close out the conference.

    8:00 pm

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