Saturday, August 5th
10:00 AM - 3:00 PM Central Time
University of Kansas Medical Center
Merriam Community Center, Kansas City, KS
Lunch will be provided.
Join MDF for a Myotonic Dystrophy Day!
MDF is hosting our first DM Day since the COVID-19 pandemic, in partnership with Kansas City Medical Center! Join us, Saturday, August 5th from 10 AM to 3 PM CST to learn from world renowned experts, researchers, and those dedicated to improving the lives of people affected by myotonic dystrophy and their caregivers. Lunch will be provided, and there will be ample opportunities to connect with the local DM community, as well as local DM experts.
About MDF DM Days
MDF Myotonic Dystrophy Days (MDF DM Days) are local events aimed and providing education, support, and connection for those affected by DM. Click here to learn more about our prior DM Day events.
Agenda - August 5th, 2023
| Time | Session |
|---|---|
| 9:00 - 10:00 AM | Arrival & Check-in |
| 10:00 - 10:15 AM | Welcome & Introduction Jeffrey Statland, MD |
| 10:15 - 10:40 AM | Genetics Overview Constantine Farmakidis, MD |
| 10:40 - 11:05 AM | Impact of DM on the Heart |
| 11:05 - 11:30 AM | Managing Sleep Issues |
| 11:30 - 11:40 AM | Break |
| 11:40 AM – 12:05 PM | Understanding the importance of Patient Reported Registries Johanna Hamel, MD |
| 12:05 - 12:30 PM | Congenital Myotonic Dystrophy Nick Johnson, MD |
| 12:30 - 1:00 PM | Lunch |
| 1:00 - 1:10 PM | Introduction to the Myotonic Dystrophy Foundation Resources |
| 1:10 - 1:15 PM | Story of Inspiration Patricia Gibson, MDF Support Group Facilitator |
| 1:15 - 1:30 PM | Introduction to Breathing Exercises Lorna Jarret, D.H.Sc |
| 1:35 - 2:00 PM | Physical Therapy, Occupational Therapy and Speech Panel |
| 2:00 - 2:55 PM | Research Updates and Q&A Avidity Bioscience, PepGen, and more! |
| 2:55 - 3:00 PM | Closing Remarks Jeffrey Statland, MD |
| 3:00 PM | Ice-Cream Social |
Date(s)