2019 MDF Annual Conference Agenda

Some stuff

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

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.

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

A program designed specifically for Juvenile-Onset Adults, facilitated by MDF community members Kathleen Austria, RTC, CTRS and Barry Cohen, Ph.D.

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.

A closed meeting for MDF Support Group Facilitators, hosted by MDF Program Director Paul Formaker.

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

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

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

Bring your dancing shoes and join community member Mindy Kim in a fun, accessible dance lesson.

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.

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

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.

Awards will be presented for best poster and oral presentations, and other research achievements. This is a joint IDMC-11/MDF Annual Conference program.

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

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.

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

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

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.

Four presentations from pharmaceutical companies currently working on DM-related therapies.

A panel of experts will answer community member questions that have been submitted throughout the weekend.

A live performance from musician Eric Hutchinson will kick off the closing dinner party. Dancing to follow.

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

A closed meeting for MDF Support Group Facilitators, hosted by the MDF Program Director. Brunch will be provided.

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.

The opening session will include a welcome and Care and Cure progress update from MDF CEO Molly White.

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.

A program designed specifically for juvenile-onset adults, facilitated by MDF community members Barry Cohen, Ph.D and Diane Bade, RN, CAVS.

Visit the Research & Vendor Showcase in the Governor's Lobby to talk to researchers about current studies, and talk with industry professionals, academic researchers.

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.

MDF-Wyck Fellows present their current research in a Poster Session.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

A panel of clinical and research experts will answer community member questions that have been submitted throughout the conference.

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

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.

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.

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

The opening session will include updates on our Care and Cure programming and some exciting Foundation announcements.

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

Grassroots Advocacy-MDF Needs You! with Jenn Dale, M.A.
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.

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.

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!

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.

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.

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'.

Exercise, Nutrition & Speech with Katy Eichenger DPT, PhD, 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.

Sleep 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.

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.

Patients Report Out: Living with DM over 50 with Moderator TBD
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.

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.

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