2019 Myotonic Annual Conference Agenda
Friday, September 13 - Friday, September 13
- Registration SessionFriday Registration; Lounge and Coffee-DetailsAgenda Detail Item
Registration
Check in and receive your free conference bag and swag!Agenda Detail Time9:00amTo Time5:00pmAgenda Detail ItemLounge and Coffee
Enjoy coffee and a sitting area with the MDF community.Agenda Detail Time9:00amTo Time12:00pm - ProgramsFirst Timers' Tea; Juvenile-onset Adult (JOA) Program FridayBarry Cohen, PhD, Diane Bade, RN, CAVS-DetailsAgenda Detail Item
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.Agenda Detail Time10:00amTo Time7:30pmAgenda Detail ItemFirst 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.Agenda Detail Time10:00amTo Time11:30am - ProgramsAdaptive Chair YogaEllen Shapiro-DetailsAgenda Detail Item
Adaptive Chair Yoga with Ellen Shapiro
Come stretch and relax in a yoga session specifically designed for people living with myotonic dystrophy.Agenda Detail Time11:00amTo Time12:00pm - BreakBreak-DetailsAgenda Detail Item
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.Agenda Detail Time12:00pmTo Time1:15pm - General SessionConference Welcome-DetailsAgenda Detail Item
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.Agenda Detail Time1:15pmTo Time1:45pm - Vendor SessionResearch & Vendor Showcase-DetailsAgenda Detail Item
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.Agenda Detail Time2:00pmTo Time5:00pm - 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, LSW-DetailsAgenda Detail Item
Female Caregivers Roundtable
Facilitated support group discussion for female caregivers of myotonic dystrophy patients.Agenda Detail Time2:00pmTo Time3:00pmAgenda Detail ItemGoing 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.Agenda Detail Time2:00pmTo Time4:00pmAgenda Detail ItemEmergency 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.Agenda Detail Time2:00pmTo Time3:00pmAgenda Detail ItemDM101: 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.Agenda Detail Time2:00pmTo Time3:00pm - ProgramsCongenital Caregivers Roundtable; Myotonic Dystrophy & the World of Work; Grassroots Advocacy-MDF Needs You!Michele Boardman, MA, CPWIC, CESP, LPC, Jenn M. Dale, MA-DetailsAgenda Detail Item
Congenital Caregivers Roundtable
Facilitated support group discussion for caregivers of congenital and childhood-onset myotonic dystrophy patients.Agenda Detail Time3:00pmTo Time4:00pmAgenda Detail ItemMyotonic 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.Agenda Detail Time3:00pmTo Time4:00pmAgenda Detail ItemGrassroots 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.Agenda Detail Time3:00pmTo Time4:00pm - ProgramsCardiac Considerations for DM2; Male Caregivers Roundtable; Adaptive Chair Yoga; DM Genetics & Family PlanningSaman Nazarian, MD, PhD, Ellen Shapiro, Darren Monckton, PhD, Tanya Bardakjian, MS-DetailsAgenda Detail Item
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.Agenda Detail Time4:00pmTo Time5:00pmAgenda Detail ItemMale Caregivers Roundtable
Facilitated support group discussion for male caregivers of myotonic dystrophy patients.Agenda Detail Time4:00pmTo Time5:00pmAgenda Detail ItemAdaptive Chair Yoga with Ellen Shapiro
Come stretch and relax in a yoga session specifically designed for people living with myotonic dystrophy.Agenda Detail Time4:00pmTo Time5:00pmAgenda Detail ItemDM 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.Agenda Detail Time4:00pmTo Time5:00pm - BreakBreak-DetailsAgenda Detail Item
Break
Agenda Detail Time5:00pmTo Time5:30pm - Social ProgramWelcome Reception & Research Poster Session-DetailsAgenda Detail Item
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.Agenda Detail Time5:30pmTo Time7:30pmAgenda Detail ItemResearch 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!Agenda Detail Time5:30pmTo Time7:30pm
Saturday, September 14 - Saturday, September 14
- BreakBreakfast-DetailsAgenda Detail Item
Breakfast
Enjoy grab and go breakfast and coffee.Agenda Detail Time7:00amTo Time8:00am - Registration SessionSaturday Registration-DetailsAgenda Detail Item
Saturday Registration
Check in and receive your free conference bag and swag!Agenda Detail Time8:00amTo Time5:00pm - 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, CAVS-DetailsAgenda Detail Item
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.Agenda Detail Time9:00amTo Time10:00amAgenda Detail ItemDM 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'.Agenda Detail Time9:00amTo Time10:00amAgenda Detail ItemListening Room
Want to share your story? Need someone to talk to? Take a break and connect with professional listeners.Agenda Detail Time9:00amTo Time5:00pmAgenda Detail ItemJuvenile-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.Agenda Detail Time9:00amTo Time5:00pmAgenda Detail ItemResearch & 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.Agenda Detail Time9:00amTo Time3:00pm - 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, LDN-DetailsAgenda Detail Item
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.Agenda Detail Time10:00amTo Time11:00amAgenda Detail ItemPain & 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.Agenda Detail Time10:00amTo Time11:00amAgenda Detail ItemCreating 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.Agenda Detail Time10:00amTo Time11:00amAgenda Detail ItemExercise, 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.Agenda Detail Time10:00amTo Time12:00pm - ProgramsMindfulness as a Disease Management Strategy, DM2 Research Update, DM and SleepJohn Day, MD, PhD, Allison Formal, MBA, Johanna Hamel, MD, Mary Holt, MSRN-DetailsAgenda Detail Item
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.Agenda Detail Time11:00amTo Time12:00pmAgenda Detail ItemDM2: 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.Agenda Detail Time11:00amTo Time12:00pmAgenda Detail ItemDM 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.Agenda Detail Time11:00amTo Time12:00pm - BreakLunch-DetailsAgenda Detail Item
Lunch
Take a break from the action and enjoy a light lunch.Agenda Detail Time12:00pmTo Time1:00pm - General SessionHeart Health: Understanding DM Cardiac SymptomsSaman Nazarian, MD, PhD-DetailsAgenda Detail Item
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.Agenda Detail Time1:00pmTo Time2:00pm - General SessionPatients Report Out: Living with DM Over 50Moderator: Laurie Gutmann, MD, University of Iowa-DetailsAgenda Detail Item
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.Agenda Detail Time2:00pmTo Time3:20pm - BreakConference ChallengeJohn Fitzpatrick, MDF Board Member-DetailsAgenda Detail Item
Conference Challenge with John Fitzpatrick, MDF Board Member
Agenda Detail Time3:20pmTo Time3:45pm - BreakBreak-DetailsAgenda Detail Item
Break
Agenda Detail Time3:45pmTo Time4:00pm - General SessionIndustry Updates (Additional Companies TBD)Industry Presenters TBD-DetailsAgenda Detail Item
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 BioAgenda Detail Time4:00pmTo Time4:50pm - General SessionMyotonic Passport Prize Drawing-DetailsAgenda Detail Item
Passport Prize Drawing
Complete your Myotonic Passport to be entered into the raffle!Agenda Detail Time4:50pmTo Time5:00pm - General SessionQ&APanelists TBD-DetailsAgenda Detail Item
Questions submitted throughout the conference will be answered by a panel of DM Professionals.
Agenda Detail Time5:00pmTo Time5:15pm - BreakCocktail Hour-DetailsAgenda Detail Item
Cocktail Hour
Enjoy an hour of cocktails and networking!Agenda Detail Time5:15pmTo Time6:15pm - Social ProgramClosing Dinner & Dance Party-DetailsAgenda Detail Item
Closing Dinner & Dance Party
A seated, multi-course dinner will be followed by a live DJ and dancing to close out the conference.Agenda Detail Time6:15pmTo Time8:30pm
Friday, September 11 - Friday, September 11
- Registration SessionRegistration-DetailsAgenda Detail Item
Registration
Check in and receive your free conference bag and swag!Agenda Detail Time7:30amTo Time5:00pm - Social ProgramNetworking & Listening Lounge; Vendor Showcase; JOA-DetailsAgenda Detail Item
Networking & Listening Lounge
Enjoy coffee and a sitting area with fellow community members.Agenda Detail Time9:00amTo Time12:00pmAgenda Detail ItemResearch & 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.Agenda Detail Time9:00amTo Time12:00pmAgenda Detail ItemJuvenile-onset Adults (JOA) Program
Agenda Detail Time9:00amTo Time12:00pm - BreakBreak-DetailsAgenda Detail Item
Break for Lunch
Enjoy a break for lunch.Agenda Detail Time12:00pmTo Time1:15pm - General SessionConference Welcome-DetailsAgenda Detail Item
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.Agenda Detail Time1:15pmTo Time2:00pm - General SessionDM101; Special Needs Legal Issues; Male Caregivers Roundtable; Female Caregivers Roundtable; Vendor Showcase; JOAPayam Soltanzadeh, MD, Battaglia Law Firm-DetailsAgenda Detail Item
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.Agenda Detail Time2:00pmTo Time3:00pmAgenda Detail ItemSpecial Needs Legal Issues with a panel from the Battaglia Law Firm
Agenda Detail Time2:00pmTo Time3:00pmAgenda Detail ItemMale Caregivers Roundtable
Facilitated support group discussion for male caregivers of myotonic dystrophy patients.Agenda Detail Time2:00pmTo Time3:00pmAgenda Detail ItemFemale Caregivers Roundtable
Facilitated support group discussion for female caregivers of myotonic dystrophy patients.Agenda Detail Time2:00pmTo Time3:00pmAgenda Detail ItemResearch & 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.Agenda Detail Time2:00pmTo Time5:00pmAgenda Detail ItemJuvenile-onset Adults (JOA) Program
Agenda Detail Time2:00pmTo Time5:00pm - General SessionGenetics; Pain Managment; Congenital Caregivers Roundtable; DM2 Meet & GreetSophia Ceulemans, MS, LCGC, Jacinda Sampson, MD, PhD-DetailsAgenda Detail Item
Genetics with Sophia Ceulemans, MS, LCGC
Agenda Detail Time3:00pmTo Time4:00pmAgenda Detail ItemPain Management with Dr. Jacinda Sampson, MD, PhD
Agenda Detail Time3:00pmTo Time4:00pmAgenda Detail ItemCongenital Caregivers Roundtable
Facilitated support group discussion for caregivers of congenital and childhood-onset myotonic dystrophy patients.Agenda Detail Time3:00pmTo Time4:00pmAgenda Detail ItemDM2 Meet & Greet
Agenda Detail Time3:00pmTo Time4:00pm - General SessionCommon Complications; Adaptive Tips & Tricks; The Arc; Caring for the CaregiverAndrew Skalsky, MD, Beth Martin, MS, CCC-SLP, ATP-DetailsAgenda Detail Item
Common Complications of Myotonic Dystrophy with Dr. Andrew Skalsky, MD
Agenda Detail Time4:00pmTo Time5:00pmAgenda Detail ItemAdaptive Tips & Tricks with Beth Martin, MS, CCC-SLP, ATP
Agenda Detail Time4:00pmTo Time5:00pmAgenda Detail ItemThe Arc
Agenda Detail Time4:00pmTo Time5:00pmAgenda Detail ItemCaring for the Caregiver
Agenda Detail Time4:00pmTo Time5:00pm - BreakBreak-DetailsAgenda Detail Item
Break
Take a break and get ready for the Welcome Reception & Poster Session!Agenda Detail Time5:00pmTo Time5:30pm - Poster SessionWelcome Reception and Poster Session-DetailsAgenda Detail Item
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.Agenda Detail Time5:30pmTo Time7:30pmAgenda Detail ItemResearch 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!Agenda Detail Time5:30pmTo Time7:30pm
Saturday, September 12 - Saturday, September 12
- Social ProgramBreakfast-DetailsAgenda Detail Item
Breakfast
Enjoy grab and go breakfast and coffee.Agenda Detail Time7:00amTo Time9:00am - Registration SessionRegistration-DetailsAgenda Detail Item
Registration
Check in and receive your free conference bag and swag!Agenda Detail Time8:00amTo Time5:00pm - General SessionDM2 Cognitive; Adult Neuromuscular; Yoga; Pediatric Neuromuscular; JOA; VendorGiovanni Meola, MD, Shaida Khan, DO /Nicholas Johnson, MD, Ellen Shapiro, Diana Castro, MD-DetailsAgenda Detail Item
DM2 Cognitive with Dr. Giovanni Meola, MD
Agenda Detail Time9:00amTo Time10:00amAgenda Detail ItemAdult Nueromuscular Issues with Dr. Shaida Khan, DO / Dr. Nicholas Johnson, MD
Agenda Detail Time9:00amTo Time10:00amAgenda Detail ItemYoga with Ellen Shapiro
Agenda Detail Time9:00amTo Time10:00amAgenda Detail ItemPediatric Neuromuscular Issues with Dr. Diana Castro, MD
Agenda Detail Time9:00amTo Time10:00amAgenda Detail ItemJuvenile-onset Adult (JOA) Program
Agenda Detail Time9:00amTo Time12:00pmAgenda Detail ItemResearch & 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.Agenda Detail Time9:00amTo Time12:00pm - BreakLunch Break-DetailsAgenda Detail Item
Lunch
Take a break from the action and enjoy a light lunch.Agenda Detail Time12:00pmTo Time1:00pm - General SessionOccupational TherapyCynthia Gagnon, PhD, OT-DetailsAgenda Detail Item
Occupational Therapy with Dr. Cynthia Gagnon, PhD, OT
Agenda Detail Time1:00pmTo Time2:00pmAgenda Detail ItemJuvenile-onset Adult (JOA) Program
Agenda Detail Time1:00pmTo Time5:00pmAgenda Detail ItemResearch & 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.Agenda Detail Time1:00pmTo Time5:00pm - General SessionPulmonary and SleepJeremy Orr, MD-DetailsAgenda Detail Item
Pulmonary & Sleep with Dr. Jeremy Orr, MD
Agenda Detail Time2:00pmTo Time3:00pm - General SessionIndustry Updates-DetailsAgenda Detail Item
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.Agenda Detail Time4:00pmTo Time5:00pm - General SessionConference Q&A-DetailsAgenda Detail Item
Conference Q&A
Questions submitted throughout the conference will be answered by a panel of DM Professionals.Agenda Detail Time5:00pmTo Time5:15pm - Social ProgramCocktail Hour-DetailsAgenda Detail Item
Cocktail Hour
Enjoy an hour of cocktails and networking!Agenda Detail Time5:15pmTo Time6:15pm - Social ProgramClosing Dinner & Dance Party-DetailsAgenda Detail Item
Closing Dinner & Dance Party
A seated, multi-course dinner will be followed by a live DJ and dancing to close out the conference.Agenda Detail Time6:15pmTo Time9:00pm