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 17th
StartFinishTopic/EventSpeakerLocation/Presentation Link
All DayFamily Check-inTamarack Lobby
6:00 PMFamily Welcome DinnerFairway, 2nd Floor HV Lodge
Thursday
July 18th
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 AMWelcomeMelissa JablonskiFairway, 2nd Fl HV Lodge
9:35 AMOverview of Krabbe NBS Dr. Dieter MaternView Presentation
9:55 AMKrabbe NBS CouncilDr. Joseph OrsiniView Presentation
10:00 AM12 PMImmeasurably More Podcast RecordingJill Kelly & Erin Kelly-Bean
10:10 AMTreatment Outcomes for Krabbe DiseaseDr. Joanne KurtzbergView Presentation
10:30 AMAdvocating for MLD NBSDr. Barbara BurtonView Presentation
10:50 AMLCN OverviewDr. Ali FatemiView Presentation
11:20 AMLCN Care Coordinators and Transition of Care for children with LeukodystrophiesCatie BeckerView Presentation
11:45 AMEducating Medical Providers about LeukodystrophiesBeth BrooksView Presentation
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 (14 yrs +)HV Clocktower
1:15 PM1:45PMOrchard Therapeutics - MLD Gene TherapyAnnamarie DillonView Presentation
1:45 PM2:15PMClinical Trial for Krabbe DiseaseKelly Bossola
2:15 PM2:45PMFamily Programs
Wall of Fame - Melissa Jablonski
Equipment & Supply Exchange - Krystle Myers
Wish Gift - Kathleen Smith
Morgan's Legacy Gift - Melissa Jablonski
Family Fundraising - Lina Sereno
Fairway, 2nd Fl HV Lodge
2:45PM3:15PMMulti-Sensory Wonderland
Kristen Malfara &
Jennifer Fitzgerald
Fairway, 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 19th
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 PartyBirdie, 2nd Fl HV Lodge
10:00 AM11:00Favorite ThingsMelissa, FamiliesFairway, 2nd Fl HV Lodge
11:00 AM11:50Podcast - Families, Siblings, etc.Erin & Jill
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 (14 yrs +)HV Clocktower
5:00 PMBalloon Release & Family Symposium Walk
(Please wear your LCN Family Collection shirts)
Overlook Terrace
6:00 PMDinnerSunrise, 1st Floor HV Lodge
7:30 PMFamily Collection Fashion ShowSunrise, 1st Floor HV Lodge
Saturday, July 20th
7:00 AM7:30Morning WorshipBirdie, 2nd Fl HV Lodge
8:30 AM10:30BreakfastSunrise, 1st Fl HV Lodge
10:00 AM5:00All Day - Free Time
10:00 AM3:00Podcast InterviewsErin and JillRoom TBD
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 Show
Sunday, July 21st
7:00 AM10:00BreakfastSnowridge, Tamarack