2013 Conference Program

Friday, November 8

10:00 - 1:00 PM

Resource Fair

1:30 - 2:15 PM

Research from a Global Perspective - The 2013 International Myotonic Dystrophy Consortium Report
Dr. Tom Cooper, Baylor College of Medicine, reports on the biennial meeting held in San Sebastian, Spain just prior to the conference (Click here to view the presentation).

2:30 - 3:30 PM

The Affordable Care Act and DM - Impact and Implications
Miriam O'Day, COPD Foundation, and Capt. James Dickens, U.S. Public Health Service, will discuss how health care reform will impact people with disabilities. Moderated by Dr. Woodie Kessel (Click here to view the Miriam O'Day presentation; click here to view Capt. James Dickens' presentation).

3:30 - 4:30 PM The U.S. Drug Testing and Approval Process
Dr. Doug Kerr, Biogen Idec, will describe the U.S. process for taking a drug from testing to approval (Click here to view Dr. Kerr's presentation).
5:00 - 7:00 PM

Welcome Reception














Included again in this year's conference is a conference track entitled Young Ambassadors, targeted to young adults ages 17 through 40 who are living with myotonic dystrophy.  YA's meet with one another to get acquainted, make new friends, and share their hopes and concerns about living with myotonic dystrophy. Topics discussed depend on the mutual interests of the participants.

Past examples have included challenges of revealing their disease to boyfriends or girlfriends, sexuality, challenges finding or keeping a job, having fun despite daily physical challenges, living as independently as possible, and supporting one another. Parents meet separately to discuss similar topics of interest in supporting YA's as they mature into adulthood. Then, both groups are brought together to share their mutual interests.

These groups are lead by a psychologist and a mental health co-leader, and both have had family members with myotonic dystrophy. More information on the Young Ambassadors program will be provided to interested participants who sign up for the YA track via the conference registration process.


Saturday, November 9

7:30 - 8:30 AM


8:30 - 9:40 AM

Breakout Session #1 (see below)

9:55 - 11:05 AM Breakout Session #2 (see below)
11:20 - 12:30 PM Breakout Session #3 (see below)

Concurrent Breakout Session Topics:

  • Daytime Sleepiness and DM:
    This new session, which focuses on DM and sleep disorders, will be presented by Dr. John Day, Stanford University, and Dr. Belen Esparis, Mt. Sinai Sleep Disorders Clinic and mother of a child living with DM.
  • DM and the Central Nervous System:
    Dr. Maurice Swanson, University of Florida, and Dr. John Day, Stanford University, will discuss the cognitive impacts of DM and the state of related research.
  • Daily Living Strategies for DM:
    Dr. Cynthia Gagnon, University of Sherbrooke, will present occupational therapy strategies that can help you manage DM and improve your day-to-day quality of life (Click here to view Dr. Gagnon's presentation).
  • Exercise and Nutrition Updates:
    Dr. Shree Pandya, University of Rochester, will share new DM exercise guidelines that community members need to know.  She'll be joined by Lucille Mullins, Pediatric Dietician at Texas Children's Hospital who will discuss nutrition and eating strategies for people living with DM (Click here to view the presentation and click here to view Dr. Pandya's presentation handout).
  • Financial Resources and Insurance:
    Steve Rhatigan, Archer Consulting Group, will offer an overview of financial resources available to people living with disabilities and tips for successfully applying for and securing these resources.  
12:30 - 1:45 PM Lunch and networking group breakouts
2:00 - 2:45 PM Developing Treatments for DM: Trial Readiness
Dr. Charles Thornton, University of Rochester, will discuss the infrastructure, standards and other components necessary to support successful clinical studies and trials, and the status of developing those components for DM trials (Click here to view Dr. Thornton's presentation).
2:45 - 3:30 PM The Clinical Trial: Real Life Experiences:
Pat Furlong, CEO of Parent Project Muscular Dystrophy, will share the experiences of Duchenne community members who have participated in clinical trials (Click here to view Pat's presentation).
3:45 - 4:45 PM Understanding ASOs: How the Drug is Designed to Work and Research Q&A:
Dr. Bruce Wentworth, Genzyme, will present an overview of  ASO treatments, describing in lay language how they are intended to treat DM (Click here to view Dr. Wentworth's presentation). 
4:45 - 5:15 PM

General Conference Q&A Session

6:00- 8:00 PM Dinner and Closing Ceremony


Sunday, November 10

9:00 - Noon Do-It-Yourself Networking
See white board at registration to sign up for or create a do-it-yourself get-together.  MDF staff will provide tables, tea and coffee.