2017 Cure JM Foundation National Conference
Livestream Videos of Educational Sessions
This year Cure JM is pleased to announce that portions of the Cure JM National Family Conference will be livestreamed on our website.
The conference is being livestreamed for the first time thanks to the extraordinary generosity of Cure JM grandparents Bruce and Judy Leetz. Thank you, Leetz family! This will allow families and patients from around the world to participate in the conference from home.
Prior to the sessions beginning, please ensure that you can view the sessions by viewing the “test” videos below. Some videos will also be archived and shared for later viewing. For help with the livestreaming, please call 866-398-2823 extension 8012.
Schedule (subject to change)
Friday, February 17th, from 2:00pm - 7:00pm Central Time (8:00pm - 1:00am GMT)
- 2:00pm - 3:45pm Central (8:00pm - 9:45pm GMT):
- “Patient Advocacy - Navigating School”, presented by Sue Carpenter, Special Education Teacher and Resource Specialist, Oak Grove School District
- “Keeping our JM family healthy: Nutrition, Exercise, and Well Being for family members with JM” presented by Shelly Nobles, Physical Therapist and Stephanie Khoury, Nutritionist
- 4:00pm - 5:00PM Central (10:00pm - 11:00pm GMT):
- “Ways to manage sun exposure”, presented by Dr. Moise Levy
- “Organizing for local chapters and walks”, presented by Beth Barrer, Chapter Program Lead, and Lauren Alvord, Walk Program Lead
- 6:00pm - 7:00pm Central (Midnight - 1:00am GMT):
- “Welcome Reception”, a meet-and-greet social time where families will meet other Cure JM families in a casual social environment
Saturday, February 18th from 9:00am - 5:30pm Central Time (3:00pm - 11:30pm GMT)
- 9:00am - 12:15pm (3:00pm - 6:15pm GMT):
- “General Session” featuring research updates and Q&A from leading JM researchers
- 2:00pm-3:30pm (8:00pm - 9:15pm GMT):
- “How to talk to your doctor” presented by Dr. Ruy Carrasco and Dr. Paul Rosen
- “Understanding Labs and Treatments: Ask the Doctors” presented by Dr. Hanna Kim, Dr. Adam Huber
- 4:00pm - 5:30pm (10:00pm - 11:30pm GMT):
- “Teen and Young Adult Transition Care” presented by Dr. Ankur Kamdar