Thursday, September 17: Pre-Conference Activities
Pre-conference Registration
First Timers' Tea Reception
Friday, September 18: Conference Program & Agenda
On Friday, attendees can choose to participate in the full-day advocacy programming, or attend the morning advocacy meetings on Capitol Hill and return to the hotel in the afternoon for the Health & Wellness University. All advocacy participants must attend the 8:30 AM advocacy training prior to the Capitol Hill meetings. Advance registration is required for both the Capitol Hill meetings and the legislative briefing.
Morning Capitol Hill Meetings
Congressional Staff
(Metro fare provided for participants)
Legislative Briefing at US Capitol
Dr. S. Subramony, MD, University of Florida;
Dr. Gersham Dent, PhD, Biogen;
Rep. Gus Bilirakis (R-FL);
Rep. Michael Burgess, MD (R-TX)
(Box Lunch Provided)
Afternoon Capitol Hill Meetings
Congressional Staff
Health & Wellness University
Meditation for Physical & Emotional Health
Adam Asare, PhD
Acupuncture for Pain & GI
Paul Robison, LAc
Adaptive Yoga
Ariele Foster, PT, DPT
Acupuncture for Pain & GI
Paul Robison, LAc
Art Therapy for JOAs
Denise Brancheau, MA, EdS, HER-BC, LCPA
Adaptive Yoga
Ariele Foster, PT, DPT
Meditation for Physical & Emotional Health
Adam Asare, PhD
Support Group Facilitators Lunch & Meeting
Conference Opening Reception & Program
Saturday, September 19: Conference Program & Agenda
On Saturday, participants have the option of attending any of the sessions within the research, physician-led and community-led tracks. The JOA track is reserved for JOAs.
General Session: Conference Welcome
Molly White
"Hazel"
Film presentation, introduction by artist Jackie Donachie
Physician-Led Track
Heart Health: Understanding DM Cardiac Symptoms
Saman Nazarian, MD
Research Track
Funding the Next Generation: Myotonic Fellows Report Out
MDF Fellow Sharon Hesterlee, PhD
Community-Led Track
Unaffected Male Caregivers: Caring for Spouses & Children
Kevin Dressler;
John Fitzpatrick;
Ted Salwin
JOA Track
Welcome, Program
Kathleen Austria;
Barry Cohen, PhD
Community-Led Track
Sarah Clarke;
Ann Spaulding;
Penni Warford
Physician-Led Track
Katy Eichinger, PT, DPT, NCS;
Ariele Foster, PT, DPT;
Mike Hamlin;
Leslie Krongold, EdD
Research Track
Accelerating Research: Talk with Dr. Sharon Hesterlee
Sharon Hesterlee, PhD
Community-Led Track
DM2: Finding the Right Doctor & Self-Advocacy
Rob Besecker;
Tom McPeek;
Tina Pinsonneault
JOA Track
JOA Program
Kathleen Austria;
Barry Cohen, PhD
Community-Led Track
Denise Millett;
Susette Ison;
Susan Trachtman
Networking Lunch
Community members will be sorted into tables based on networking interests as selected during conference registration.
Physician-Led Track
Craig Campbell, MD, FRCPC
Research Track
Early Stage Therapies Update: Drugs Under Development
Sharon Hesterlee, PhD;
Michael French, Marina Biotech;
Friedrich Metzger, PhD, Roche;
Takako Moriguchi, PhD, Genzyme
Community-Led Track
Caregivers Only: Maintaining Intimacy
Kathleen Austria;
Flo Brekka;
Ritika Puri
JOA Track
JOAs & Caregivers: Strategies for Motivating Group Discussion
Barry Cohen, PhD
Physician-Led Track
Keep Smiling: DM & Oral Health
Steve Perlman, DDS
Community-Led Track
Coping Strategies for Adults with DM1
Dean Sage;
Edibell Stone;
Shannon Taylor
General Session: ADL & Technology - Using Apps for Independence
Betsy Furler, BridgingApps
General Session: Understanding Reimbursement - Insurance & Patient Advocacy
Mike Adelberg, Sr. Director, Faegre BD;
Bruce Quinn, MD, Ph.D, Sr. Director, Faegre BD;
Dave Zook, Chair, Faegre BD
General Session: Clinical Trial Update - DMPKrx Phase I/II
Laurence Mignon, PhD, Isis Pharmaceuticals
General Session: Conference Wrap-Up & Community Awards Presentation
Jeremy Kelly
