DRAFT Program

The Program will change once we have final confirmation on our speakers and family registrations.

All Week
8:00am to 8:00pm		Prayer RoomEveryone Welcome!Birdie, 2nd Fl HV Lodge
All WeekPhotography StudioSign up sheet available in dining room.Moonshadow, 1st Fl HV Lodge
All WeekSensory RoomEveryone Welcome!Explorer, 1st Fl HV Lodge
Wednesday
July 16th
StartFinishTopic/EventSpeakerLocation/Presentation Link
All DayFamily Check-inTamarack Lobby
6:00 PMFamily Welcome DinnerFairway, 2nd Floor HV Lodge
Thursday
July 17th
7:00 AM7:30Morning WorshipBirdie, 2nd Fl HV Lodge
8:00 AM9:30BreakfastSunrise, 1st Fl HV Lodge
8:45 AMKid Kamp OpensCreekside
8:50AM9:20AMPrayer PartyDrake & Christina LevasheffBirdie, 2nd Fl HV Lodge
9:30 AMWelcomeJacque WaggonerFairway, 2nd Fl HV Lodge
9:35 AMTBDTBD
9:55 AMKrabbe NBS CouncilDr. Joseph Orsini
10:00 AM12 PMTBDTBD
10:10 AMTreatment Outcomes for Krabbe DiseaseDr. Joanne Kurtzberg
10:30 AMAdvocating for NBSTBD
10:50 AMLCN OverviewTBD
11:20 AMLCN Care Coordinators TBD
11:45 AMTBD
Kid Kamp Closes for lunch
12:00 PM1:00LunchSunrise, 1st Floor HV Lodge
1:00 PM1:10Kid Kamp Opens
1:00 PM3:00 PMSibling ChallengeFor Siblings (12 yrs +)HV Clocktower
1:15 PM1:45PMOrchard Therapeutics - MLD Gene TherapyTBD
1:45 PM2:15PMClinical Trial for Krabbe DiseaseTBD
2:45PM3:15PMMulti-Sensory Wonderland
Kristen Malfara &
Jennifer Fitzgerald		Fairway, 2nd Fl HV Lodge
2:15 PM2:45PMFairway, 2nd Fl HV Lodge
3:15PM3:45PMQ&AFairway, 2nd Fl HV Lodge
4:30 PMKid Kamp Closes
5:00 PMGroup Photos
(Please wear your Symposium t-shirts)		HV Clocktower
5:45 PMDinnerSunrise, 1st Floor HV Lodge
6:45 PM Evening ActivitiesSunrise, 1st Floor HV Lodge
Friday
July 18th
7:00 AM7:30Morning WorshipBirdie, 2nd Fl HV Lodge
8:00 AM10:00BreakfastSunrise, 1st Floor HV Lodge
8:45 AMKid Kamp OpensCreekside
9:00 AM9:45Prayer PartyDrake & Christina LevasheffBirdie, 2nd Fl HV Lodge
10:00 AM11:00Favorite ThingsFamiliesFairway, 2nd Fl HV Lodge
11:00 AM11:50TBD
Fairway, 2nd Fl HV Lodge
11:50 PMKid Kamp Closes for lunch
12:00 PM1:30LunchSunrise, 1st Fl HV Lodge
1:15 PMKid Kamp OpensCreekside
1:30 PM4:00Breakout Sessions
Men's SessionModerated by Mel SerenoMoonshadow, 1st Fl HV Lodge
Women's SessionModerated by Christina LevasheffBirdie, 2nd Fl HV Lodge
Sibling's Session (12 years and up)Moderated by Wyatt AbnerBunker, 2nd Fl HV Lodge
4:00 PMKid Kamp Closes
4:00 PM5:00 PMSibling ChallengeFor Siblings (12 yrs +)HV Clocktower
5:00 PMBalloon Release & Family Symposium Walk
(Siblings, please wear your Sibling Collection shirts)		Overlook Terrace
6:00 PMDinnerSunrise, 1st Fl HV Lodge
7:30 PMSibling Collection Fashion ShowSunrise, 1st Fl HV Lodge
Saturday, July 19th
7:00 AM7:30Morning WorshipBirdie, 2nd Fl HV Lodge
8:30 AM10:30BreakfastSunrise, 1st Fl HV Lodge
10:00 AM5:00All Day - Free Time
Lunch on Your Own
3:00 PM5:00 PMSibling Challenge| ChampionshipAll are welcome to watch!HV Clocktower
5:00 PMDinnerSunrise, 1st Fl HV Lodge
6:30 PMTalent ShowSunrise, 1st Fl HV Lodge
Sunday, July 21st
7:00 AM10:00BreakfastSnowridge, Tamarack