Registration
Check in and receive your free conference bag and swag!
2019 Myotonic Annual Conference Agenda
Friday, September 13
-
Registration SessionFriday Registration; Lounge and CoffeeClick for Details
- 9:00 - 17:00
- 9:00 - 12:00
Lounge and Coffee
Enjoy coffee and a sitting area with the MDF community.
5:00 pm -
ProgramsFirst Timers' Tea; Juvenile-onset Adult (JOA) Program FridayBarry Cohen, PhD, Diane Bade, RN, CAVSClick for Details
- 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.
7:30 pm -
ProgramsAdaptive Chair YogaEllen ShapiroClick for Details
- 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 pm - 12:00 pmBreak
-
General SessionConference WelcomeClick for Details
- 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.
1:45 pm -
ProgramsFemale Caregivers Roundtable; Going to School with Myotonic Dystrophy: Understanding Special Education & I.D.E.A.; Emergency Preparedness; DM101: Understanding the Disease BasicsKathy Boundy, JD, Darlene Shelton, Lauren Elman, MD, Sarah Stoney, MSW, LSWClick for Details
- 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.
4:00 pm -
Vendor SessionResearch & Vendor ShowcaseClick for Details
- 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.
5:00 pm -
ProgramsCongenital Caregivers Roundtable; Myotonic Dystrophy & the World of Work; Grassroots Advocacy-MDF Needs You!Michele Boardman, MA, CPWIC, CESP, LPC, Jenn M. Dale, MAClick for Details
- 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.
4:00 pm -
ProgramsCardiac Considerations for DM2; Male Caregivers Roundtable; Adaptive Chair Yoga; DM Genetics & Family PlanningSaman Nazarian, MD, PhD, Ellen Shapiro, Darren Monckton, PhD, Tanya Bardakjian, MSClick for Details
- 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.
5:00 pm - 5:00 pmBreak
-
Social ProgramWelcome Reception & Research Poster SessionClick for Details
- 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!
7:30 pm
Saturday, September 14
- 7:00 amBreakfast
-
Registration SessionSaturday RegistrationClick for Details
- 8:00 - 17:00
Saturday Registration
Check in and receive your free conference bag and swag!
5:00 pm -
Registration SessionFinancial Planning & DM; DM Behavioral & Mental Health: Understanding Symptoms & Management Strategies; Listening Room; JOA Program; Research & Vendor ShowcasePat Bergmaier, CFP®, ChSNC, Melissa Dixon, PhD, MS, Barry Cohen, PhD, Diane Bade, RN, CAVSClick for Details
- 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.
5:00 pm -
ProgramsPalliative 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 AbilityDoris Leung, MD, PhD, Jacinda Sampson, MD, PhD, Katy Eichinger, PhD, DPT, Leslie Vnenchak, MA, CCC-SLP, Robin Meyers, RD, MPH, LDNClick for Details
- 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.
12:00 pm -
ProgramsMindfulness as a Disease Management Strategy, DM2 Research Update, DM and SleepJohn Day, MD, PhD, Allison Formal, MBA, Johanna Hamel, MD, Mary Holt, MSRNClick for Details
- 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 pm - 12:00 pmLunch
-
General SessionHeart Health: Understanding DM Cardiac SymptomsSaman Nazarian, MD, PhDClick for Details
- 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.
2:00 pm -
General SessionPatients Report Out: Living with DM Over 50Moderator: Laurie Gutmann, MD, University of IowaClick for Details
- 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.
3:20 pm - 3:20 pmConference Challenge
- 3:45 pmBreak
-
General SessionIndustry Updates (Additional Companies TBD)Industry Presenters TBDClick for Details
- 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
4:50 pm -
General SessionMyotonic Passport Prize DrawingClick for Details
- 16:50 - 17:00
Passport Prize Drawing
Complete your Myotonic Passport to be entered into the raffle!
5:00 pm -
General SessionQ&APanelists TBDClick for Details
- 17:00 - 17:15
Questions submitted throughout the conference will be answered by a panel of DM Professionals.
5:15 pm - 5:15 pmCocktail Hour
-
Social ProgramClosing Dinner & Dance PartyClick for Details
- 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.
8:30 pm
Friday, September 11
-
Registration SessionRegistrationClick for Details
- 7:30 - 17:00
Registration
Check in and receive your free conference bag and swag!
5:00 pm -
Social ProgramNetworking & Listening Lounge; Vendor Showcase; JOAClick for Details
- 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 pm - 12:00 pmBreak
-
General SessionConference WelcomeClick for Details
- 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.
2:00 pm -
General SessionDM101; Special Needs Legal Issues; Male Caregivers Roundtable; Female Caregivers Roundtable; Vendor Showcase; JOAPayam Soltanzadeh, MD, Battaglia Law FirmClick for Details
- 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
3:00 pm -
General SessionGenetics; Pain Managment; Congenital Caregivers Roundtable; DM2 Meet & GreetSophia Ceulemans, MS, LCGC, Jacinda Sampson, MD, PhDClick for Details
- 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
4:00 pm -
General SessionCommon Complications; Adaptive Tips & Tricks; The Arc; Caring for the CaregiverAndrew Skalsky, MD, Beth Martin, MS, CCC-SLP, ATPClick for Details
- 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
5:00 pm - 5:00 pmBreak
-
Poster SessionWelcome Reception and Poster SessionClick for Details
- 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!
7:30 pm
Saturday, September 12
-
Social ProgramBreakfastClick for Details
- 7:00 - 9:00
Breakfast
Enjoy grab and go breakfast and coffee.
9:00 am -
Registration SessionRegistrationClick for Details
- 8:00 - 17:00
Registration
Check in and receive your free conference bag and swag!
5:00 pm -
General SessionDM2 Cognitive; Adult Neuromuscular; Yoga; Pediatric Neuromuscular; JOA; VendorGiovanni Meola, MD, Shaida Khan, DO /Nicholas Johnson, MD, Ellen Shapiro, Diana Castro, MDClick for Details
- 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.
10:00 am - 12:00 pmLunch Break
-
General SessionOccupational TherapyCynthia Gagnon, PhD, OTClick for Details
- 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.
2:00 pm -
General SessionPulmonary and SleepJeremy Orr, MDClick for Details
- 14:00 - 15:00
Pulmonary & Sleep with Dr. Jeremy Orr, MD
3:00 pm -
General SessionIndustry UpdatesClick for Details
- 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.
5:00 pm -
General SessionConference Q&AClick for Details
- 17:00 - 17:15
Conference Q&A
Questions submitted throughout the conference will be answered by a panel of DM Professionals.
5:15 pm -
Social ProgramCocktail HourClick for Details
- 17:15 - 18:15
Cocktail Hour
Enjoy an hour of cocktails and networking!
6:15 pm -
Social ProgramClosing Dinner & Dance PartyClick for Details
- 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.
9:00 pm