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CLICK HERE TO VIEW THE FULL AGENDA WITH SPEAKERS

The agenda is subject to change.

All times listed are in Central Daylight Time (CDT).

*Pre-registration is required.

Thursday, July 11, 2024
8:30 am – 5:00 pm Board Meeting
4:00 pm – 7:00 pm Families Check-in / Information Desk
6:00 pm – 7:00 pm New Families – Orientation & Reception
6:00 pm – 7:00 pm Grandparents & Extended Family Members – Reception
6:00 pm – 7:00 pm Donors’ Reception
6:30 pm – 9:00 pm SIBs Swimming, Dinner & Games
7:00 pm – 9:00 pm Welcome Reception – Family Reunion (Everyone is welcome!)
9:00 pm – 11:30 pm Poker!
9:00 pm – until SIBs Outing (21+)

Friday, July 12, 2024
6:00 am – 7:15 am Yoga
7:30 am – 8:00 am Prayer Room Available
7:30 am – 5:00 pm Families Check-In / Information Desk
7:30 am – 5:00 pm *Explorers’ Camp
7:30 am – 9:00 am *Breakfast
9:00 am – 9:15 am Welcome & Housekeeping Information
9:15 am – 12:30 pm The Science – Research Session
9:15 am – 10:30 am SIBS General Session: Fun and Games!
10:30 am – 10:45 am Break
10:45 am – 12:30 pm SIBs Breakout & Grief Sessions

  • Branches of Hope: Reaching for the Light
12:30 pm – 2:00 pm *Lunch
2:00 pm – 3:15 pm Breakout Sessions:

  • Palliative Care: Debunking the Stigmas
  • Courageous Parent’s Network: Finding Guidance
  • Case Management 101
2:00 pm – 3:30 pm Pet Therapy
2:00 pm – 3:15 pm SIBs Breakout Sessions
2:00 pm – 3:15 pm LGO Session: Acknowledging the Unseen
3:15 pm – 3:30 pm Break
3:15 pm – 4:30 pm Brainstorming for Future Programming (Open to all family supporters)
3:30 pm – 4:45 pm Support Groups by CLN Type (for families with living children), bereaved parents and grandparents
3:30 pm – 4:45 pm SIBs Breakout Sessions
5:00 pm – 5:30 pm SIBs Group Picture
5:30 pm – 9:00 pm *SIBs Outing – City Museum & Dinner
5:30 pm – 10:00 pm *LGO Offsite Activity – Comedy Club & Dinner
6:00 pm – 8:00 pm Dinner (On Your Own)
8:00 pm – 10:00 pm Trivia Night!

Saturday, July 13, 2024
6:00 am – 7:15 am
 Yoga
7:30 am – 8:00 am Prayer Room Available
7:30 am – 4:00 pm Families Check-in / Information Desk
7:30 am – 5:00 pm *Explorers’ Camp
7:30 am – 8:30 am *Breakfast
8:30 am – 10:00 am Welcome & Ask-A-Doc
8:30 am – 10:00 am SIBs Breakout Sessions
8:45 am – 12:45 pm *LGO Activity – Craft & Sip (Grandparents and extended family are welcome!)
10:00 am – 10:15 am Break
10:15 am – 2:45 pm *SIBs Outing – Science Center & Lunch
10:15 am – 11:30 am Breakout Sessions:

  • How to Develop a Life Plan for Your Child with Disabilities
  • Behavior, Cognition, and Learning
  • EveryLife Foundation for Rare Diseases: Advocacy and Policies
11:30 am – 11:45 am Break
11:45 am – 12:45 pm Support Groups by CLN Type (for families with living children), bereaved parents and grandparents
12:00 pm – 4:00 pm Centers of Excellence Meeting
12:45 pm – 1:45 pm *Lunch
1:45 pm – 2:45 pm Breakout Sessions:

  • Managing Caregiver Stress/Burnout
  • Ask-A-Doc Continued
  • ABLE Accounts vs Special Needs Trusts: An In-Depth Discussion
2:00 pm – 3:30 pm Music Therapy
3:00 pm – 3:15 pm Break
3:00 pm – 4:30 pm SIBs Pool Party (Ages 6-12)
3:00 pm – 4:30 pm Breakout Sessions:

  • Ask-A-SIB
  • Anticipatory Grief
5:00 pm – 6:00 pm Children Prepare for Parade
6:00 pm – 11:00 pm Dinner Dance
Pet Therapy and Music Therapy will be held during Explorers’ Camp.

Sunday, July 14, 2024
8:00 am – 10:00 am *Breakfast
9:00 am – 10:30 am Celebration of Life

Simply Incredible Batten Specialist (SIBs) Agenda 

Limited to siblings of a Batten-affected child

Thursday, July 11, 2024
6:30 pm – 9:00 pm Swimming, Dinner & Games
9:00 pm – until Outing (21+)
   

Friday, July 12, 2024
9:15 am – 10:30 am SIBS General Session: Fun and Games!
10:45 am – 12:30 pm Breakout & Grief Sessions

  • Branches of Hope: Reaching for the Light
2:00 pm – 3:15 pm Breakout Sessions
3:00 pm – 4:30 pm Breakout Sessions
5:00 pm – 5:30 pm Group Picture
5:30 pm – 9:00 pm *Outing – City Museum & Dinner
   

Saturday, July 13, 2024
8:30 am – 10:00 am Breakout Sessions
10:15 am – 2:45 pm *Outing – Science Center & Lunch
3:00 pm – 4:30 pm Breakout Sessions (13+)
3:00 pm – 4:30 pm
 SIBs Pool Party (Ages 6-12)

Life Goes On (LGO) Activities

Limited to parents who have lost a child/children to Batten disease

Friday, July 12, 2024
2:00 pm – 3:15 pm Breakout Session: Acknowledging the Unseen
5:30 pm – 10:00 pm *Offsite Activity – Comedy Club & Dinner
   

Saturday, July 13, 2024
8:45 am – 12:45 pm *Sip & Create (Grandparents and extended family are welcome!)
   

Sunday, July 14, 2024
9:00 am – 10:30 am Celebration of Life


The agenda is subject to change.

*Pre-registration is required.