The 2014 MDF Annual Conference occurred in Washington, DC September 12-13 at the Washington Hilton Hotel. The meeting was an incredible opportunity to hear updates from our academic, research and pharmaceutical partners, and take advantage of new and expanded conference offerings. Read a summary of the 2014 Conference.
Advocacy was a key theme at the 2014 MDF Annual Conference. We chose Washington, DC as the location for the 2014 conference to highlight the growing importance of advocacy in advancing Care and a Cure for DM.
For community members who couldn't join us in person, MDF was pleased to provide a livestream broadcast via a link on our homepage starting September 12th. Livestreaming was available through Saturday, September 13th at 5 PM.
Videos and Powerpoint presentations for all livestreamed sessions are available via the links below. Videos with PowerPoint presentations for the community led track sessions will be uploaded very shortly.
This year MDF offered four themed tracks:
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Track #1: Grassroots advocacy training so community members could advocate successfully for DM with legislators
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Track #2: Community-led sessions on a broad array of topics that also promoted networking
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Track #3: Living with DM sessions led by DM physicians that focused on managing symptoms and improving quality of life
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Track #4: Juvenile Onset Adults (JOA) program
Thursday, September 11: Pre-Conference Activities
3:00 PM - 6:00 PM
Pre-Conference Registration
Friday, September 12: Pre-Conference Activities
8:30 AM - 5:00 PM
Registration & Resource Fair
8:30 AM - 12:00 PM
Advocacy Briefing & Congressional Office Meetings
10:00 AM - 11:00 AM
Support Group Facilitators Meeting
11:00 AM - 12:00 PM
TeamMDF Volunteer Program Meeting
11:00 AM - 12:00 PM
Adaptive Yoga
Led by Ariele Foster, PT, DPT, registered yoga teacher.
12:00 PM - 1:00 PM
Break: No Nost Lunch
Friday, September 12: Conference Program Agenda
1:00 PM - 1:30 PM
Conference Welcome
- Jeremy Kelly, MDF Board Chair;
- RADM Boris Lushniak, MD, MPH, Acting US Surgeon General
1:30 PM - 2:30 PM
General Session: The One-Hour Activist - Raising Your Voice for DM
Christopher Kush, Soapbox Consulting
2:30 PM - 3:30 PM
General Session: Role of the Federal Government in Advancing DM Science & Care - The FDA & NIH
- Ron Farkas, MD, PhD, Lead Medical Officer, Division of Neurology Products, FDA (presentation)
- John Porter, PhD; Program Director, Neurogenetics Cluster, NINDS, NIH (presentation)
- Moderated by Woodie Kessel, MD, MPH, Assistant Surgeon General (ret.)
3:30 PM - 3:45 PM
Break
3:45 PM - 5:00 PM
General Session: State of the Science - the Next Generation of DM Researchers
- MDF Fellows: Ayal Hendel, PhD (presentation);
- Suzanne Rzuczek, PhD (presentation);
- Eric Wang, PhD (presentation);
- Yao Yao, PhD (presentation)
- Moderator: John Day, MD, PhD
- Moderator: Charles Thornton, MD
5:00 PM - 5:15 PM
Conference Q&A
5:30 PM - 7:30 PM
Welcome Reception & Program
Saturday, September 13: Conference Program Agenda
8:00 AM - 9:00 AM
Breakfast
9:00 AM - 9:50 PM
Community Led
Challenges for Juvenile
Onset Adults: Parent Focus
- Chuck Hunt;
- Diane Bade;
- Larry Lord;
- (Web Resources)
Ambassadors
JOA General Session: Warm Up Exercise
- Kathleen Austria;
- Barry Cohen, PhD
9:30 PM - 9:50 PM
Community Led
Working with Hippotherapy
- Sarah Berman;
- Erica Kelly;
- Catherine Wycoff, DPT, GCFP, ABMCP
- (Video) (Web Resources)
9:50 AM - 10:00 AM
Break
10:00 AM - 10:50 AM
Ambassadors
JOA Breakout Session By Age Group
- Kathleen Austria;
- Barry Cohen, PhD
10:20 AM - 10:40 AM
10:40 AM - 10:50 AM
10:50 AM - 11:00 AM
Break
11:00 AM - 11:50 AM
Community Led
Maintaining Independence
- Lindsay Baran;
- Josh Crowder;
- Leslie Krongold, EdD
- (Web Resources)
Living with DM
DM and Emotional Health: Depression and Anxiety
- Benjamin Gallais, PhD;
- Sarah Tighe, MD
- (Presentation)
Ambassador
JOA Program Break
JOAs are invited to attend the "Maintaining Independence" or "Beyond ADL" sessions.
11:30 AM - 12:00 PM
Living with DM
Beyond ADL: Strategies for Transportation, Work/Life Modifications, Socializing, and More
Cynthia Gagnon, PhD, OT (Video) (Presentation)
12:00 PM - 1:00 PM
Lunch
1:00 PM - 1:50 PM
Living with DM
DM and Emotional Health: Depression and Anxiety
- Benjamin Gallais, PhD;
- Sarah Tighe, MD
- (Presentation)
Ambassador
JOA General Session: JOAs and their Caregivers - Joint Program
- Kathleen Austria;
- Barry Cohen, PhD
1:00 PM - 1:50 PM
Community Led
DM2: Focus on Pain Management
- John Brekka;
- Bob Crowder;
- Andrea Hershman;
- (Web Resources)
Living with DM
Beyond ADL: Strategies for Transportation, Work/Life Modifications, Socializing, and More
Cynthia Gagnon, PhD, OT (Video) (Presentation)
1:50 PM - 2:15 PM
Break
2:15 PM - 3:15 PM
General Session: Advocating in the Clinic: Educating & Supporting Your Doctors
- John Day, MD, PhD (Presentation);
- Jacinda Sampson, MD, PhD (Presentation);
- Carolyn Valek, certified patient advocate (Presentation)
3:15 PM - 4:15 PM
General Session: Beyond Biology - Important DM Research Projects, Conference Q&A
- Chad Heatwole, MD (Presentation);
- Sarah Howe (Presentation);
- Darren Monckton, PhD (Presentation);
- Cynthia Gagnon, PhD (Presentation);
- Moderator Mel Kohn, MD, MPH
4:15 PM - 4:45 PM
General Session: Isis Clinical Trial Update
Frank Bennett, PhD, Senior Vice President of Research, Isis Pharmaceuticals
4:45 PM - 5:15 PM
Community Updates and Conference Q & A
5:30 PM - 7:00 PM
Dinner & Closing Remarks
Jeremy Kelly, MDF Board Chair
7:30 PM - TBD