Thank you to the record number of 2014 MDF conference attendees, over 100 in all, who participated in our post-conference survey this year – more than double the responses we’ve received in previous years!
This year’s oversold conference, held last month in Washington, DC, was arguably the most successful conference to date with unparalleled participation from researchers, industry and federal agency representatives and a number of programmatic “firsts.” Feedback from our conference attendees gave positive marks to 98% of general and breakout sessions and offered insightful comments and suggestions that will help us plan next year’s event.
Among the highest-rated general conference sessions were the “Isis Clinical Trial Update,” and “State of The Science: Next Generation of DM Researchers.” In the words of one participant, “Extremely uplifting; a very valuable chance to hear the researchers explain their own work and the promise it provides.”
The conference’s first-ever advocacy track, which included a briefing on MDF's issues, meetings on Capitol Hill with members of Congress and their staffs, and training sessions on grassroots advocacy, were popular. The majority of survey participants provided a “very satisfied” rating, and attendees noted, “I thoroughly enjoyed the advocacy sessions,” “They gave me ideas about what to do,” and “Mr. Kush’s presentation was extremely valuable in raising the group's overall awareness of how to focus congressional attention on DM.”
The four conference tracks provided a range of topics for attendees to choose from. Living with DM was one of the most highly rated of the conference tracks, providing clinician and researcher-led breakout sessions with new presenters that included Todd Goodglick, MD, of Washington Eye Physicians, discussing common DM-related ophthalmological issues in his outstanding presentation “Vision & Eye Health” and Stanford University’s Linda Nguyen, MD, Director of Neurogastroenterology and Motility who presented Gastrointestinal Health, discussing the relation to myotonic dystrophy and methods to combat symptoms. “Linda Nguyen was amazing. Very helpful, knowledgeable and not very heady,” commented one attendee.
The all-new community-led sessions, organized by MDF Outreach Director Dr. Leslie Krongold to deliver advice from affected families to other affected families, received strong ratings from survey participants. Session topics included family planning, staying physically fit, maintaining independence and caregiver focus. As one respondent noted: “So very informative.”
The value of interacting with community members as well as healthcare and research experts continued to be very important for most attendees. Respondents appreciated interactive opportunities at lunch and dinner events while noting a desire for more time allotted for Q&A during sessions and for networking in general. One attendee said, “As this was our first conference, it was nice to talk and meet other people going through what we are going through.”
Respondents also provided input on topics they would like to see at future MDF conferences, including continued updates on research and more access to research information. As one participant summed it up, the conference “provided valuable information and helped me immensely understand more about the varied issues surrounding myotonic dystrophy.”
Insights from the survey will be an invaluable tool as we plan for next year’s event taking place Sept. 18-19, 2015, once again in Washington, D.C. If you did not participate in the survey and would like to provide feedback, please free to contact us. We are continuously focused on making the conference useful and rewarding for our attendees, and we can’t do so without feedback from our audience – you!