2019 Myotonic Annual Conference Agenda

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

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.

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

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.

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.

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

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.

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.

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

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

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.

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.

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'.

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

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.

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.

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.

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.

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.

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.

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

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.

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

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

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

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.

Genetics with Sophia Ceulemans, MS, LCGC

Pain Management with Dr. Jacinda Sampson, MD, PhD

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

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

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

The Arc

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.

DM2 Cognitive with Dr. Giovanni Meola, MD

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

Yoga with Ellen Shapiro

Pediatric Neuromuscular Issues with Dr. Diana Castro, MD

Juvenile-onset Adult (JOA) Program

Occupational Therapy with Dr. Cynthia Gagnon, PhD, OT

Juvenile-onset Adult (JOA) Program