2015 MDF Annual Conference

The 2015 MDF Annual Conference was an enormous success! This year's conference included:


  • NEW Health & Wellness University: Interactive yoga, and meditation sessions and an information session on acupuncture for pain and GI issues that focus on improving quality of life.
  • Meetings on Capitol Hill: On Friday morning, you will be briefed on our legislative agenda and then taken up to Capitol Hill via the Metro (MDF will provide Metro fare cards for attendees) for meetings with your members of Congress. You may choose to participate in just morning meetings, or a full day of meetings. Those returning to the hotel at noon can participate in the Health & Wellness University program, which begins after lunch.
  • Congressional Briefing: A legislative briefing at the US Capitol featuring key members of Congress and their staffs. Space is limited, and a boxed lunch will be provided.


  • Community-Led Sessions: Sessions on topics such as planning your child's IEP, caregiver sessions and a session just for unaffected male caregivers, and coping strategies for adults with DM, all designed to promote information sharing between community members and networking.
  • Physician-Led Sessions: Sessions led by DM clinicians that focus on understanding and managing symptoms, including ADL & Technology: Finding Tools that Work, Staying Strong: DM & Exercise, and more.
  • NEW Research Sessions: Sessions on current and upcoming research led by DM scientists and MDF research director Dr. Sharon Hesterlee, and a presentation from current MDF fellows.
  • JOA Track: Sessions for adults living with juvenile-onset DM, featuring a new art therapy session on Friday, and other activities.

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


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

Community-Led Track

Planning Your Child's IEP

Sarah Clarke;
Ann Spaulding;
Penni Warford

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

Closing Dinner Party