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2019 MDF Annual Conference Agenda

Friday, September 13

  • Registration Session
    Friday Registration; Lounge and Coffee
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    • Registration
      Check in and receive your free conference bag and swag!

      9:00am - 5:00pm
    • Lounge and Coffee
      Enjoy coffee and a sitting area with the MDF community.

      9:00am - 12:00pm
    5:00 pm
  • Programs
    First Timers' Tea; Juvenile-onset Adult (JOA) Program Friday
    Barry Cohen, PhD, Diane Bade, RN, CAVS
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    • Juvenile-onset Adult (JOA) Program with Barry Cohen, PhD and Diane Bade, RN, CAVS
      A program designed specifically for juvenile-onset DM adults, facilitated by MDF community members.

      10:00am - 7:30pm
    • First Timers' Tea
      A welcome session for first-time attendees. Learn tips for having a successful conference experience and get a personal mentor to help you navigate the two-day event. MDF Board members, support group facilitators and experienced attendees will present, and we’ll have a session cheat sheet to help you plan your experience. Beverages will be served.

      10:00am - 11:30am
    7:30 pm
  • Programs
    Adaptive Chair Yoga
    Ellen Shapiro
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    • Adaptive Chair Yoga with Ellen Shapiro
      Come stretch and relax in a yoga session specifically designed for people living with myotonic dystrophy.

      11:00am - 12:00pm
    12:00 pm
  • 12:00 pm
    Break
  • Vendor Session
    Research & Vendor Showcase
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    • Research & Vendor Showcase
      Visit the Research & Vendor Showcase to talk to researchers about current studies, meet the famous Service Dogs, academic researchers, local organizations and more.

      12:00pm - 5:00pm
    5:00 pm
  • General Session
    Conference Welcome
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    • Conference Welcome
      The opening session will include updates on our Care and Cure programming and some exciting Foundation announcements.

      1:00pm - 1:45pm
    1:45 pm
  • Programs
    Female Caregivers Roundtable; Going to School with Myotonic Dystrophy: Understanding Special Education & I.D.E.A.; Emergency Preparedness; DM101: Understanding the Disease Basics
    Kathy Boundy, JD, Darlene Shelton, Lauren Elman, MD, Sarah Stoney, MSW, LSW
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    • Female Caregivers Roundtable
      Facilitated support group discussion for female caregivers of myotonic dystrophy patients.

      2:00pm - 3:00pm
    • Going to School with Myotonic Dystrophy: Understanding Special Education & I.D.E.A., with Kathy Boundy, JD & Sarah Stoney, MSW, LSW
      Listen to a panel of parents and an expert discuss I.D.E.A., U.S. legislation directing special education programs, and how to navigate transitions through school for children with myotonic dystrophy.

      2:00pm - 4:00pm
    • Emergency Preparedness with Darlene Shelton
      Learn how you can successfully manage medical emergencies. The speaker is the founder of an alliance focused on emergency preparedness for rare diseases and will share great information about emergency protocols for those with special needs.

      2:00pm - 3:00pm
    • DM101: Understanding the Disease Basics with Lauren Elman, MD
      A session for first-time attendees and those interested in a refresher on DM genetics, symptom burden and disease management strategies.

      2:00pm - 3:00pm
    4:00 pm
  • Programs
    Congenital Caregivers Roundtable; Myotonic Dystrophy & the World of Work; Grassroots Advocacy-MDF Needs You!
    Michele Boardman, MA, CPWIC, CESP, LPC, Jenn M. Dale, MA
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    • Congenital Caregivers Roundtable
      Facilitated support group discussion for caregivers of congenital and childhood-onset myotonic dystrophy patients.

      3:00pm - 4:00pm
    • Myotonic Dystrophy & the World of Work with Michele Boardman, MA, CPWIC, CESP, LPC
      An employment expert will review strategies, tips and information on how to navigate the employment process while living with myotonic dystrophy, including job searching, resume building, interviewing and more.

      3:00pm - 4:00pm
    • Grassroots Advocacy-MDF Needs You! with Jenn M. Dale, MA
      Join MDF’s public policy consultant and advocacy expert to learn how you can educate your members of Congress about myotonic dystrophy and advocate for important research and care legislation.

      3:00pm - 4:00pm
    4:00 pm
  • Programs
    Cardiac Considerations for DM2; Male Caregivers Roundtable; Adaptive Chair Yoga; DM Genetics & Family Planning
    Saman Nazarian, MD, PhD, Ellen Shapiro, Darren Monckton, PhD, Tanya Bardakjian, MS
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    • Cardiac Considerations for DM2 with Saman Nazarian, MD, PhD
      A cardiologist with expertise in myotonic dystrophy will explain how DM2 can impact cardiac function, including an overview of the cardiac electrical system, common symptoms associated with conduction problems, and preventative measures.

      4:00pm - 5:00pm
    • Male Caregivers Roundtable
      Facilitated support group discussion for male caregivers of myotonic dystrophy patients.

      4:00pm - 5:00pm
    • Adaptive Chair Yoga with Ellen Shapiro
      Come stretch and relax in a yoga session specifically designed for people living with myotonic dystrophy.

      4:00pm - 5:00pm
    • DM Genetics & Family Planning with Darren Monckton, PhD and Tanya Bardakjian, MS
      Experts in DM genetics will discuss family planning and myotonic dystrophy, including the specifics of the genetic mutation, and practical considerations for affected community members considering starting a family.

      4:00pm - 5:00pm
    5:00 pm
  • 5:00 pm
    Break
  • Social Program
    Welcome Reception & Research Poster Session
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    • Welcome Reception
      Join community members and DM professionals at the opening reception. Hors d'oeuvres will be served and a cash bar will be available. Be sure to visit the research poster session that will occur during the reception.

      5:30pm - 7:30pm
    • Research Poster Session (During Welcome Reception)
      MDF research Fellows, industry professionals and academic researchers present their current research and answer questions via 1:1 discussions at their posters. Grab a beverage and circulate!

      5:30pm - 7:30pm
    7:30 pm

Saturday, September 14

  • 7:00 am
    Breakfast
  • Vendor Session
    Research & Vendor Showcase II
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    • Research & Vendor Showcase
      Visit the Research & Vendor Showcase to talk to researchers about current studies, meet the famous Service Dogs, academic researchers, local organizations and more.

      8:30am - 3:00pm
    3:00 pm
  • Programs
    Juvenile-onset Adult (JOA) Program Saturday
    Barry Cohen, PhD, Diane Bade, RN, CAVS
    Click for Details
    • Juvenile-onset Adult (JOA) Program with Barry Cohen, PhD and Diane Bade, RN, CAVS
      A program designed specifically for juvenile-onset DM adults, facilitated by MDF community members.

      9:00am - 6:00pm
    6:00 pm
  • Registration Session
    Saturday Registration; Occupational Therapy: the Latest Tools & Resources; Financial Planning & DM; DM Behavioral & Mental Health: Understanding Symptoms & Management Strategies; Listening Room
    Cynthia Gagnon, PhD, OT, Pat Bergmaier, CFP®, ChSNC, Melissa Dixon, PhD, MS
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    • Saturday Registration
      Check in and receive your free conference bag and swag!

      9:00am - 5:00pm
    • Occupational Therapy: the Latest Tools & Resources with Cynthia Gagnon, PhD, OT
      This session will review current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources.

      9:00am - 10:00am
    • Financial Planning & DM with Pat Bergmaier, CFP®, ChSNC
      This session will review financial planning including government benefits, special needs trusts and wills, social security, and more.

      9:00am - 10:00am
    • DM Behavioral & Mental Health: Understanding Symptoms & Management Strategies with Melissa Dixon, PhD, MS
      This discussion will focus on mental health challenges and symptoms sometimes experienced by people living with DM, and strategies for coping with everything from depression to anxiety and 'brain fog'.

      9:00am - 10:00am
    • Listening Room
      Want to share your story? Need someone to talk to? Take a break and connect with professional listeners.

      9:00am - 5:00pm
    5:00 pm
  • Programs
    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
    Matthew Mendlik, MD, PhD, Doris Leung, MD, PhD, Jacinda Sampson, MD, PhD, Katy Eichinger, PhD, DPT, Leslie Vnenchak, MA, CCC-SLP, Robin Meyers, RD, MPH, LDN
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    • Palliative Care: Improving Quality of Life at Every Stage with Matthew Mendlik, MD, PhD
      Learn more about the importance of palliative care in managing myotonic dystrophy, including symptom management strategies that will help those living with DM improve their quality of life now.

      10:00am - 11:00am
    • Pain & DM2: Updated Information on Symptoms & Coping Strategies with Doris Leung, MD, PhD
      Come to this session to understand the science of pain in DM2 and learn strategies to successfully manage it. This session is recommended specifically for anyone diagnosed with DM2 and their caregivers.

      10:00am - 11:00am
    • Creating Your Clinical Care Team with Jacinda Sampson, MD, PhD
      Learn about the importance of, and strategies for, creating the right medical team for your or a family members’ optimal myotonic dystrophy care.

      10:00am - 11:00am
    • Exercise, Nutrition & Speech with Katy Eichinger, PhD, DPT, Leslie Vnenchak, MA, CCC-SLP, and Robin Meyers, RD, MPH, LDN
      This rehabilitation panel will review current research and strategies for managing DM symptoms through exercise, speech and nutrition.

      10:00am - 12:00pm
    12:00 pm
  • Programs
    Mindfulness as a Disease Management Strategy, DM2 Research, Sleep
    John Day, MD, PhD, Allison Formal, MBA, Johanna Hamel, MD, Mary Holt, MSRN
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    • Mindfulness as a Disease Management Strategy with Mary Holt, MSRN
      Explore ways to become more mindful in your life and how mindfulness can affect your quality of life and overall mood. The speaker is a nurse who has worked in the areas of mental health and provided care for myotonic dystrophy patients.

      11:00am - 12:00pm
    • DM2: Updates on Research and Symptom Management with Johanna Hamel, MD and Allison Formal, MBA
      Come hear about the latest updates in research for DM2 from a top DM2 clinician and researcher in the field.

      11:00am - 12:00pm
    • DM and Sleep: What's New, What Works with John Day, MD, PhD
      Learn about current research and management strategies regarding myotonic dystrophy sleep issues, including disregulated sleep patterns and excessive daytime sleepiness.

      11:00am - 12:00pm
    12:00 pm
  • 12:00 pm
    Lunch
  • General Session
    Cardiac General Session
    Saman Nazarian, MD, PhD
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    • Cardiac General Session with Saman Nazarian, MD, PhD
      This session will explains how DM may impact your heart, and gives an overview of the cardiac electrical system, common symptoms associated with conduction problems, and preventative measures.

      1:00pm - 2:00pm
    2:00 pm
  • General Session
    Patients Report Out: Living with DM Over 50
    Ericka Simpson, MD
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    • Patients Report Out: Living with DM over 50 with Ericka Simpson, MD
      This interactive panel session will be similar in format to the Living with DM: Patient Report on Changes Over Time that was presented at the 2018 MDF Annual Conference. Panelists will discuss the disease symptom changes they have experienced living with myotonic dystrophy, followed by facilitated audience participation. This session will help researchers and drug developers understand disease changes and progression from the perspective of over-50 individuals living with DM and their families.

      2:00pm - 3:20pm
    3:20 pm
  • 3:20 pm
    Conference Challenge
  • General Session
    Industry Updates and Q&A
    Industry Presenters TBD
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    • Industry Updates and Q&A with Industry Presenters TBD
      Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field, including companies new to the MDF Annual Conference.

      3:30pm - 5:00pm
    5:00 pm
  • 5:00 pm
    Cocktail Hour
  • Social Program
    Closing Dinner & Dance Party
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    • Closing Dinner & Dance Party
      A seated, multi-course dinner will be followed by a live DJ and dancing to close out the conference.

      6:15pm - 8:30pm
    8:30 pm

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