2020 Myotonic Annual Conference Agenda

Friday, September 13

    • 9:00 - 17:00

      Registration
      Check in and receive your free conference bag and swag!

    • 9:00 - 12:00

      Lounge and Coffee
      Enjoy coffee and a sitting area with the MDF community.

    • 10:00 - 19:30

      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.

    • 10:00 - 11:30

      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.

    • 11:00 - 12:00

      Adaptive Chair Yoga with Ellen Shapiro
      Come stretch and relax in a yoga session specifically designed for people living with myotonic dystrophy.

    • 12:00 - 13:15

      Lunch
      Enjoy a break for lunch. Find plenty of options at the historic Reading Terminal Market, one of America’s largest and oldest public markets.

    • 13:15 - 13:45

      Conference Welcome
      The opening session will include updates on our Care and Cure programming and some exciting Foundation announcements, including the presentation of the Kayla Vittek Memorial Award for Outstanding Community Advocate.

    • 14:00 - 15:00

      Female Caregivers Roundtable
      Facilitated support group discussion for female caregivers of myotonic dystrophy patients.

    • 14:00 - 16:00

      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.

    • 14:00 - 15:00

      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.

    • 14:00 - 15:00

      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.

    • 14:00 - 17:00

      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.

    • 15:00 - 16:00

      Congenital Caregivers Roundtable
      Facilitated support group discussion for caregivers of congenital and childhood-onset myotonic dystrophy patients.

    • 15:00 - 16:00

      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.

    • 15:00 - 16:00

      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.

    • 16:00 - 17:00

      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.

    • 16:00 - 17:00

      Male Caregivers Roundtable
      Facilitated support group discussion for male caregivers of myotonic dystrophy patients.

    • 16:00 - 17:00

      Adaptive Chair Yoga with Ellen Shapiro
      Come stretch and relax in a yoga session specifically designed for people living with myotonic dystrophy.

    • 16:00 - 17:00

      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.

    • 17:00 - 17:30

      Break

    • 17:30 - 19:30

      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.

    • 17:30 - 19:30

      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!

Saturday, September 14

    • 7:00 - 8:00

      Breakfast
      Enjoy grab and go breakfast and coffee.

    • 8:00 - 17:00

      Saturday Registration
      Check in and receive your free conference bag and swag!

    • 9:00 - 10:00

      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.

    • 9:00 - 10:00

      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'.

    • 9:00 - 17:00

      Listening Room
      Want to share your story? Need someone to talk to? Take a break and connect with professional listeners.

    • 9:00 - 17:00

      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.

    • 9:00 - 15:00

      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.

    • 10:00 - 11:00

      Palliative Care: Improving Quality of Life at Every Stage
      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.

    • 10:00 - 11:00

      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.

    • 10:00 - 11:00

      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.

    • 10:00 - 12:00

      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.

    • 11:00 - 12:00

      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.

    • 11:00 - 12:00

      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.

    • 11:00 - 12:00

      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.

    • 12:00 - 13:00

      Lunch
      Take a break from the action and enjoy a light lunch.

    • 13:00 - 14:00

      Heart Health: Understanding DM Cardiac Symptoms 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.

    • 14:00 - 15:20

      Patients Report Out: Living with DM over 50 moderated by Laurie Gutmann, MD, University of Iowa
      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.

    • 15:20 - 15:45

      Conference Challenge with John Fitzpatrick, MDF Board Member

    • 15:45 - 16:00

      Break

    • 16:00 - 16:50

      Industry Updates (Additional Companies 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:
      Art Levin, PhD, Avidity Biosciences
      Romesh Subramanian, Dyne Therapeutics
      Matt Disney, PhD., Expansion Therapeutics
      Laury Mignon, PhD, Ionis Therapeutics
      Gene Yeo, PhD, Locana Bio

    • 16:50 - 17:00

      Passport Prize Drawing
      Complete your Myotonic Passport to be entered into the raffle!

    • 17:00 - 17:15

      Questions submitted throughout the conference will be answered by a panel of DM Professionals.

    • 17:15 - 18:15

      Cocktail Hour
      Enjoy an hour of cocktails and networking!

    • 18:15 - 20:30

      Closing Dinner & Dance Party
      A seated, multi-course dinner will be followed by a live DJ and dancing to close out the conference.

Friday, September 11

    • 7:30 - 17:00

      Registration
      Check in and receive your free conference bag and swag!

    • 9:00 - 12:00

      Networking & Listening Lounge
      Enjoy coffee and a sitting area with fellow community members.

    • 9:00 - 12:00

      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.

    • 9:00 - 12:00

      Juvenile-onset Adults (JOA) Program

    • 12:00 - 13:15

      Break for Lunch
      Enjoy a break for lunch.

    • 13:15 - 14:00

      Conference Welcome
      The opening session will include updates on our Care and Cure programming and some exciting Foundation announcements, including the presentation of the Kayla Vittek Memorial Award for Outstanding Community Advocate.

    • 14:00 - 15:00

      Myotonic Dystrophy 101 with Dr. Payam Soltanzadeh, MD
      A session for first-time attendees and those interested in a refresher on DM genetics, symptom burden and disease management strategies.

    • 14:00 - 15:00

      Special Needs Legal Issues with a panel from the Battaglia Law Firm

    • 14:00 - 15:00

      Male Caregivers Roundtable
      Facilitated support group discussion for male caregivers of myotonic dystrophy patients.

    • 14:00 - 15:00

      Female Caregivers Roundtable
      Facilitated support group discussion for female caregivers of myotonic dystrophy patients.

    • 14:00 - 17:00

      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.

    • 14:00 - 17:00

      Juvenile-onset Adults (JOA) Program

    • 15:00 - 16:00

      Genetics with Sophia Ceulemans, MS, LCGC

    • 15:00 - 16:00

      Pain Management with Dr. Jacinda Sampson, MD, PhD

    • 15:00 - 16:00

      Congenital Caregivers Roundtable
      Facilitated support group discussion for caregivers of congenital and childhood-onset myotonic dystrophy patients.

    • 15:00 - 16:00

      DM2 Meet & Greet

    • 16:00 - 17:00

      Common Complications of Myotonic Dystrophy with Dr. Andrew Skalsky, MD

    • 16:00 - 17:00

      Adaptive Tips & Tricks with Beth Martin, MS, CCC-SLP, ATP

    • 16:00 - 17:00

      The Arc

    • 16:00 - 17:00

      Caring for the Caregiver

    • 17:00 - 17:30

      Break
      Take a break and get ready for the Welcome Reception & Poster Session!

    • 17:30 - 19:30

      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.

    • 17:30 - 19:30

      Research Poster Session (During Welcome Reception)
      Myotonic 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!

Saturday, September 12

    • 7:00 - 9:00

      Breakfast
      Enjoy grab and go breakfast and coffee.

    • 8:00 - 17:00

      Registration
      Check in and receive your free conference bag and swag!

    • 9:00 - 10:00

      DM2 Cognitive with Dr. Giovanni Meola, MD

    • 9:00 - 10:00

      Adult Nueromuscular Issues with Dr. Shaida Khan, DO / Dr. Nicholas Johnson, MD

    • 9:00 - 10:00

      Yoga with Ellen Shapiro

    • 9:00 - 10:00

      Pediatric Neuromuscular Issues with Dr. Diana Castro, MD

    • 9:00 - 12:00

      Juvenile-onset Adult (JOA) Program

    • 9:00 - 12:00

      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.

    • 12:00 - 13:00

      Lunch
      Take a break from the action and enjoy a light lunch.

    • 13:00 - 14:00

      Occupational Therapy with Dr. Cynthia Gagnon, PhD, OT

    • 13:00 - 17:00

      Juvenile-onset Adult (JOA) Program

    • 13:00 - 17:00

      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.

    • 14:00 - 15:00

      Pulmonary & Sleep with Dr. Jeremy Orr, MD

    • 16:00 - 17:00

      Industry Updates
      Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field, including companies new to the Myotonic Annual Conference.

    • 17:00 - 17:15

      Conference Q&A
      Questions submitted throughout the conference will be answered by a panel of DM Professionals.

    • 17:15 - 18:15

      Cocktail Hour
      Enjoy an hour of cocktails and networking!

    • 18:15 - 21:00

      Closing Dinner & Dance Party
      A seated, multi-course dinner will be followed by a live DJ and dancing to close out the conference.

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