MDF held its fifth annual conference on November 8-10 in Houston, Texas to a sold-out crowd of 300 community members, caregivers, academic researchers and their program and lab partners, and pharmaceutical company representatives. It was arguably MDF’s most successful conference yet. Community feedback on our Facebook page was very positive, and the breadth and depth of presenters and information presented was outstanding. The range of representatives from academia and pharmaceutical and biotech companies was unparalleled and attendees definitely delivered the fun factor with their great attitudes and snazzy Western wear!
Please mark your calendar's for next year's conference! The 2014 MDF Annual Conference will be in Washington, DC, September 12-14. We're making a specific commitment to raise myotonic dystrophy awareness and visibility with legislators and regulators. We hope to see you there!
2013 conference Objectives:
Bring up-to-date disease management strategies and information to the community
Enable community networking to empower members and create connections that live on when community members return home
Educate the community on the drug development and clinical trial processes in the US, in advance of upcoming trials
This year’s conference had excellent presentations from well-known research and clinical leadership, such as:
Dr. Cynthia Gagnon speaking on strategies and tools for daily living
Dr. Shree Pandya discussing updated physical therapy and exercise guidelines
Dr. John Day presenting on sleep disorders and DM
We also welcomed some compelling new presenters, including:
Dr. Doug Kerr from Biogen Idec who presented an overview of the drug development and approval process in the US
Pat Furlong, CEO of Parent Project Muscular Dystrophy offering a perspective on what it’s like to participate in a clinical trial.
Dr. Bruce Wentworth from Genzyme/Sanofi providing an overview of how antisense oligonucleotide treatments are designed to work
Networking and Connecting
You spoke and we listened! Due to feedback in past years, this year’s conference had several formal and informal opportunities for community networking, including a welcome reception with adaptive line dancing on Friday night. There was also an organized networking lunch on Saturday where community members sat at assigned tables with other members from their geographic regions, and Do-It-Yourself networking meetings on Sunday morning.
MDF provided community member business cards on the networking tables so attendees could fill them out and circulate them during the conference—something that received rave reviews from attendees! The Friday reception and Saturday closing dinner were Western themed and community members showed up decked out in full cowboy/cowgirl regalia. This not only created a fun atmosphere for the evening, but ensure the Friday night line dancing was pretty authentic! Photos of all the fun will be posted soon on the MDF Facebook page so check back to see some of your fellow community members in action.
U.S. Drug Development and Approval Process
Finally, MDF was intent on providing our attendees with a comprehensive overview of the drug development and clinical trial processes in the US to ensure that community members are educated and can make informed decisions in the future.
The drug development and clinical trial overviews were uniformly outstanding, and we highly recommend that you view the videos of these sessions on the program page.
Drug development in the US is a lengthy, difficult and expensive process that ultimately generates very few actual marketable treatments, and the clinical trial process can be expensive, painful, emotionally challenging and require a significant time commitment. It’s very important that DM community members understand the processes, and the advantages and disadvantages of the clinical trial process, as the DM drug development process moves forward.
All in all, the conference was a wonderful opportunity to share new and important information on living with DM and the latest research updates, catch up with old friends, make new ones and help newly-diagnosed family members start the journey with support and friendship.
Adaptive yoga sessions and a celebration of DM caregivers helped round out the program. Importantly, we loved having the opportunity to meet in-person many of the people we talk to on the phone and connect with via email. For the MDF team, that was the conference highlight!
This year’s conference was dedicated to the memory and legacy of Shannon Lord, our founding Board Chair, advocate extraordinaire and tireless liaison connecting academia and the research community with DM patients. Shannon helped bring the patient face and voice to research and is credited with elevating the importance of DM impacts on the CNS with researchers. Shannon is irreplaceable, but her legacy and impact will continue.