Thursday, July 18

 

8:00am-4:00pm:               Golf Outing

8:00am-4:30pm:               Board Meeting

Noon-8:00pm:                  Conference Registration and Scientific/Medical Studies Registration

6:30-7:30pm:                     Grandparent/Extended Family Happy Hour

6:00-7:30pm:                     New Family Meet and Greet

7:30-9:30pm:                     Sibs Meet and Greet

7:30-9:30pm:                     Welcome Reception (Light snacks and a cash bar will be available)

9:00pm-Midnight:            Texas Hold’Em Poker Tournament

9:30-11:00pm:                  Adult SIBS meet up (21+)

 

Friday, July 19

 

8:30am-6:00pm:              Conference Registration Open

7:45-8:45am:                    Breakfast on your own

8:15am-Noon:                  Batten Kids Care

8:30am-Noon:                  Teddy Bear Club for children ages 2-5

8:30am -9:00:                   First Time/Newly Diagnosed Session

9:00am- 10:00am:           Announcements and Opening Session

10:00am-10:00pm:          The Batten Disease Memorial is on display throughout the weekend for reflection and remembrance. 

10:15-11:45am:                CLN1s CLN2s CLN3 s CLN5-8 s Undiagnosed Moms Session / CLN1s CLN2s CLN3 s CLN5-8 s Undiagnosed Dads Session

10:15-11:45am:                Grief and Family Session

10:15-11:45am:                Grandparents and extended family Session

Noon-1:00pm:                  Lunch (meal ticket required)

1:00-5:00pm:                    Life Goes On Outing

1:00-5:00pm:                    Batten Kids Care

1:00-5:00pm:                    Teddy Bear Club for children ages 2-5

1:15-2:15pm                     Concurrent Sessions

2:30-3:30pm                     Concurrent Sessions

3:45-4:45pm:                     CLN1s CLN2s CLN3 s CLN5-8 s Undiagnosed Moms Session / CLN1s CLN2s CLN3 s CLN5-8 s Undiagnosed Dads Session/

3:45-4:45pm:                     Grandparents and Extended Family Session with Researcher

6:00-7:15pm:                     Dinner (meal ticket required)

5:30-10:00pm:                  Sibs Outing

8:00-10:00pm:                  Trivia game - A fun evening of team-based trivia

Saturday, July 20

 

7:45-8:45am:                    Breakfast on your own

8:00am-6:00pm:              Conference Registration Open

8:15am- 8:45am:             Genetics and Batten 101 (Coffee, tea, and water will be provided)  

8:30am-1:30pm:               Sibs Outing

8:30am-12:30:                  Batten Kids Care

8:30am-12:30:                  Teddy Bear Club for children ages 2-5

9:00-10:15am:                  Clinical Trial and Translational Research Updates - Industry will share overviews and updates on current and upcoming trials

10:30am-11:45am           Batten Research Overview - Researchers share latest findings basic research (Coffee, tea, and water will be provided) 

10:00am-9:00pm:            The Batten Disease Memorial is on display for reflection and remembrance.

12:00-1:00pm:                  Lunch (meal ticket required)

1:00-2:00pm:                    Research Open House & Poster Session - View posters outlining the work of Batten researchers from all over the world.

1:00-5:00pm:                    Batten Kids Care

1:00-5:00pm:                    Teddy Bear Club for children ages 2-5

3:00-5:00pm:                     Music Therapy  For affected children

2:30-3:45pm:                     Sib/Parent Panel - Parents and siblings of those with Batten disease have a conversation about cares, concerns and coping  

5:00-6:00pm:                     Preparation for the Kid’s Parade -- Our Batten kids get decked out in themed accessories for this special event

6:00-6:30pm:                     Kid’s Parade - Affected children are announced and escorted by their siblings as they make their way into the dining room

6:30-8:00pm:                     Banquet and Program

8:00-11pm:                        Dance Party - The ultimate dance party and the SIBS Dollar Dance 

Sunday, July 21

 

8:00-11:00am:                  Conference Registration Open

8:00-11:30am:                  Batten Kids Care

8:00-11:30am:                  Teddy Bear Club for children ages 2-5

9:00-10:00am:                  Breakfast (meal ticket required)

10:00-11:00am:                Celebration of Life - This reflective ceremony honors the memories of loved ones lost to Batten disease

10:00-11:00am:                First Time/Newly Diagnosed Families Decompression Session - This session encourages conference attendees to discuss their experiences during the weekend and thoughts about the future 

11:30am:                           Farewells