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2014 MDF Annual Conference Content

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:

  • Track #1: Grassroots advocacy training so community members could advocate successfully for DM with legislators
  • Track #2: Community-led sessions on a broad array of topics that also promoted networking
  • Track #3: Living with DM sessions led by DM physicians that focused on managing symptoms and improving quality of life
  • 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 and Resource Fair 
8:30 AM - 12:00 PM  Advocacy Briefing and 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 - 11:50 AM

Adaptive Yoga - led by Ariele Foster, PT, DPT, registered yoga teacher

12:00 PM- 1:00 PM  Break: No Host 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)
Moderated by John Day, MD, PhD & 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     
  Track #1
Advocacy
Track #2
Community Led
Track #3
Living with DM
Track #4
Ambassadors

8:00 AM- 9:00 AM

Breakfast

Breakfast 

Breakfast 

Breakfast

9:00 AM-9:50 AM  

Advocacy Training
(presentation)
Christopher Kush

Challenges for Juvenile 
Onset Adults: Parent Focus
(web resources)
Chuck Hunt; Diane Bade;
Larry Lord 

GI Health
(video) (presentation)
Linda Nguyen, MD

JOA General Session:
Warm Up Exercise

Kathleen Austria;
Barry Cohen, PhD

   

Working with Hippotherapy
(video) (web resources)
Sarah Berman; Erica Kelly;
Catherine Wycoff, DPT,
GCFP, ABMCP

Vision & Eye Health
(video
Todd Goodglick, MD

 
9:50 AM - 10:00 AM  Break  Break  Break  Break

10:00 AM - 10:50 AM 

Advocacy Training
(presentation)
Elizabeth Florence, JD;
Woodie Kessel, MD, MPH

Family Planning
(web resources)
Hamsa and Steve Kiryakoza;
Caroline Easterling

GI Health
(video) (presentation)
Linda Nguyen, MD

JOA Breakout Session
By Age Group

Kathleen Austria;
Barry Cohen, PhD

    Food Prep for Dysphagia
(video) (web resources)
Regina Thompson; 
Jessica Nussbaum
Vision & Eye Health
(video) 
Todd Goodglick, MD
 
 
   

Staying Physically Fit
(web resources)
Saurabh Rai; Amy Ream;
Mindy Kim

   
10:50 AM - 11:00 AM  Break Break Break  Break

11:00 AM - 11:50 AM
 

Advocacy Training
(presentation)
John Fitzpatrick;
Todd Stone, JD

Maintaining Independence
(web resources)
Lindsay Baran; Josh Crowder; Leslie Krongold, EdD

DM and Emotional Health:
Depression and Anxiety

(presentation)
Benjamin Gallais, PhD;
Sarah Tighe, MD

JOA Program Break

(JOAs invited to attend 
"Maintaining Independence"
or "Beyond ADL" sessions)

   

Caregiver Focus
(web resources)
Kristin Korsgaard;
Richard Weston 

Beyond ADL: Strategies for
Transportation, Work/Life

Modifications, Socializing,
and More

(video) (presentation)
Cynthia Gagnon, PhD, OT

 
12:00 PM - 1:00 PM  Lunch  Lunch  Lunch  Lunch
1:00 PM - 1:50 PM    Traveling with DM
(video) (web resources)
Loraine Dressler;
Elizabeth Florence, JD
DM and Emotional Health:
Depression and Anxiety

(presentation)
Benjamin Gallais, PhD;
Sarah Tighe, MD
JOA General Session: JOAs
and their Caregivers - Joint
Program

Kathleen Austria;
Barry Cohen, PhD
    DM2: Focus on Pain
Management

(web resources)
John Brekka; Bob Crowder;
Andrea Hershman 
Beyond ADL: Strategies for
Transportation, Work/Life
Modifications, Socializing,
and More

(video) (presentation)
Cynthia Gagnon, PhD, OT
 
1:50 PM - 2:15 PM Break Break Break 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 and Closing Remarks
Jeremy Kelly, MDF Board Chair
7:30 PM - TBD Twilight Washington Monuments Tour

 

 

 

 

 

 

 

 

 

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