Thursday, September 17: Pre-Conference Activities
3:00 - 7:00 PM
Pre-conference Registration
5:00 - 5:45 PM
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.
8:30 AM - 5:00 PM
Conference Registration
10:00 AM - 5:00 PM
Vendor Showcase
Advocacy Track
8:30 - 9:00 AM
Advocacy Training
10:00 - 11:45 AM
Morning Capitol Hill Meetings
Congressional Staff
(Metro fare provided for participants)
12:00 - 1:00 PM
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)
1:30 - 4:00 PM
Afternoon Capitol Hill Meetings
Congressional Staff
Health & Wellness University
1:00 - 1:55 PM
Meditation for Physical & Emotional Health
Adam Asare, PhD
Acupuncture for Pain & GI
Paul Robison, LAc
2:00 - 2:55 PM
Adaptive Yoga
Ariele Foster, PT, DPT
Acupuncture for Pain & GI
Paul Robison, LAc
2:00 - 4:00 PM
Art Therapy for JOAs
Denise Brancheau, MA, EdS, HER-BC, LCPA
3:00 - 4:00 PM
Adaptive Yoga
Ariele Foster, PT, DPT
Meditation for Physical & Emotional Health
Adam Asare, PhD
4:00 - 5:30 PM
Support Group Facilitators Lunch & Meeting
5:30 - 7:30 PM
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.
8:00 AM - 1:00 PM
Vendor Showcase
9:00 - 9:15 AM
General Session: Conference Welcome
Molly White
9:15 - 9:45 AM
"Hazel"
Film presentation, introduction by artist Jackie Donachie
10:00 - 10:50 AM
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
10:30 - 10:50 AM
11:00 - 11:50 AM
Physician-Led Track
Staying Strong: DM & Exercise Panel
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
10:30 - 10:50 AM
Community-Led Track
Strategies for Motivating Juvenile-Onset Adults
Denise Millett;
Susette Ison;
Susan Trachtman
12:00 - 1:00 PM
Networking Lunch
Community members will be sorted into tables based on networking interests as selected during conference registration.
1:00 - 1:50 PM
Physician-Led Track
Focus on Congenital DM: What to Expect & Tips for Managing
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
1:30 - 1:50 PM
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
3:00 - 3:55 PM
General Session: ADL & Technology - Using Apps for Independence
Betsy Furler, BridgingApps
3:00 - 3:55 PM
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
4:00 - 4:45 PM
General Session: Clinical Trial Update - DMPKrx Phase I/II
Laurence Mignon, PhD, Isis Pharmaceuticals
4:45 - 5:00 PM
General Session: Conference Wrap-Up & Community Awards Presentation
Jeremy Kelly
6:00 - 8:00 PM