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Monday, March 6

  • 10:00 am
    Coffee Break
  • Associations & Families
    Session 1
    Session Test One
    William Holden
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    • 6:15pm - 6:30pm

      Some stuff

    7:15 pm

Tuesday, March 7

  • Oral Presentations
    Making do with Nothing
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    8:00 pm

Thursday, September 7

  • Registration Session
    Thursday Registration
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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
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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
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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
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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.
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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
    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.

    2:00 pm
  • Programs
    Breakout Sessions: Congenital Family Roundtable; Male Caregivers; Orthotics and Mobile Devices
    Click for Details
    • 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
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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
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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
  • Programs
    Breakout Sessions: Female Caregivers; DM 101; Becoming a DM Advocate
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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
  • Vendor Session
    Accessing State and Federal Resources: Expert Workshop
    Stephen Dale, Dale Law Firm, PC, Daniel Fortuño, Benefits Education Center
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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
    Chair Tap Dance Lesson
    Mindy Kim
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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
  • Social Program
    Opening Reception, Poster Session & Vendor Showcase
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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
  • 5:30 pm
    Opening Reception

Saturday, September 9

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

    5:00 pm
  • Vendor Session
    Saturday Research & Vendor Fair
    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
  • General Session
    IDMC-11 Awards Presentation
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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
  • 9:45 am
    Coffee Break
  • General Session
    Bringing the Patient Voice to CNS-Targeting Drug Development in Myotonic Dystrophy
    James Valentine, J.D.
    Click for Details
    • 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
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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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
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    • Four presentations from pharmaceutical companies currently working on DM-related therapies.

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

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

    7:30 pm
  • 5:45 pm
    Closing Dinner Party and Performance

Tuesday, October 31

  • Costume Party
    Click for Details
    8:00 pm

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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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
    JOA Program 2
    Barry Cohen, Ph.D., Diane Bade, RN, CAVS
    Click for Details
    • 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
    Click for Details
    • 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
    Living with DM: Patients Report on Changes Over Time
    Moderator: Charles Thornton, MD, University of Rochester
    Click for Details
    • 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
    Strategies for Managing Progression
    Cynthia Gagnon, OT, PhD, Missy Dixon, PhD
    Click for Details
    • 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
    Click for Details
    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
    Click for Details
    • 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
    Click for Details
    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.
    Click for Details
    • 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
    Click for Details
    • 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
    Click for Details
    • 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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