2017 Patient Advocacy Summit Schedule

 

Download a printable Schedule of Events:  KdVS Patient Advocacy Summit 2017 Schedule of Events

Schedule of Events (tentative):

Thursday, 7/13/17 (Optional Activities)

• 7:00 – 8:00 am Breakfast at Embassy Suites and Hampton Inn & Suites for hotel guests
• 7:00 – 8:15 am Registration Open in Embassy Suites Lobby
• 8:45 am Arrive at St. Jude Children’s Research Campus
• 9:00 – 10:15 am Group 1 tour of St. Jude Children’s Research Hospital*
*Children’s activities will take place in the Pavilion during the tours (one parent will need to be present at all times with their children.)
• 10:30 – 11:45 am Group 2 tour of St. Jude Children’s Research Hospital*
*Children’s activities will take place in the Pavilion during the tours (one parent will need to be present at all times with their children.)
• Morning Doctors present the latest on KdVS to St. Jude Medical Staff (Doctors only)
• 12:00 – 1:00 pm Lunch provided by St. Jude
• 1:15 pm Depart St. Jude Children’s
• Afternoon Doctors present to Le Bonheur Children’s Hospital (Doctors Only)
• 4:30 – 6:00 pm Meet and Greet at Hampton Inn & Suites
• 6:00 – 7:00 pm Registration Open in Embassy Suites Lobby

Friday, 7/14/17

• 7:00 – 8:00 am Breakfast at Embassy Suites and Hampton Inn & Suites for hotel guests
• 7:00 – 9:00 am Registration Open in Embassy Suites Lobby
• 7:45 am – 3:15 pm Childcare open in Hampton Inn & Suites (advance registration required – CHILDCARE REGISTRATION IS NOW CLOSED)
• 8:00 – 8:15 am Welcome and opening Remarks in Embassy Suites
• 8:15 – 8:45 am  Dr. Bert de Vries – Getting to KdVS: a History
• 8:45 – 9:15 am Dr. David Koolen – The Clinical Spectrum of KdVS
• 9:15 – 9:30 am Break
• 9:30 – 10:00 am Katrin Linda, Radboud University Medical – Underlying Mechanisms and Molecular Data
• 10:00 – 10:45 am Dr. Morgan – KdVS Speech Study Results
• 10:50 – 11:35 am Dr. Myers – KdVS Epilepsy Study Results
• 11:45 am – 1:00 pm Table Topic Lunch (paid adults only)
• 1:15 – 2:00 pm Dr. Mark Durand – Dealing with Sleep Issues for Special Needs Individuals
• 2:00 – 2:30 pm Eugenia Kim and Jeff Berg – Post-School Experience in Life and Job for Special Needs Individuals

Saturday, 7/15/17

• 7:00 – 8:00 am Breakfast at Embassy Suites and Hampton Inn & Suites for hotel guests
• 7:00 – 9:00 am Registration Open in Embassy Suites Lobby
• 8:00 – 8:15 am Welcome and Opening Remarks in Embassy Suites – KdVS Special Guest, Sam Goto
• 8:15 – 9:30 am Moderated Q&A Session with doctors and speakers
• 11:00 am – 3:00 pm Carnival Event for Families (free for everyone)
• 6:35 pm Redbirds Baseball Game (optional) $16 ticket includes box seat, hot dog, drink and baseball cap FIREWORKS AFTER THE GAME. Read more under “Plan Your Trip”.