2015 Family Conference Program
Subject to change
Thursday, July 9
8am-4pm: Golf Outing
8am-5pm: Board of Directors Meeting
Noon-6pm: Conference Registration and Scientific/Medical Studies Registration (for research, diagnosis, carrier testing)
5:00-10:30pm:Baseball outing – Kane County Cougars vs. Wisconsin
6:30-7:30pm:Grandparent/Extended Family Happy Hour
6:30-7:30pm:New Family Mixerprovides an overview of conference events and introduction of new families
6-9pm: Sibs Event
7:30-9:30pm: Welcome Reception brings together all attendees to meet and mingle
9pm: Sibs 21 and older meet up
9pm-Midnight:Hospitality Room Open
Friday, July 10
7:45-8:45am: Breakfast available at Burnham’s
8:30am-Noon: Childcare for affected children, and the Teddy Bear Club for children ages 2-5
8:45-10:30am:Sibs group meets for team building
9:00-11:00am:Opening Session
9:00-5pm: Conference Registration Open
9am-5pm:Blood Draws (for research, diagnosis and carrier testing)
10-10pm: The Batten Disease Memorial is on display throughout the weekend for reflection and remembrance
10:45-Noon:Sibs Group Break-Out Sessions – designated age groups have a chance to meet with the scientists and ask questions
11:00-Noon:First Time/Newly Diagnosed Session
11:30-Noon:Life Goes On Meet & Greet –Chicago BDSRA Chapter leaders welcome and introduce bereaved family members before they leave for their afternoon outing
12:15-1:15pm:Lunch
1:15-5:00:Sibs meet again by age groups for facilitated discussions and activities
1-5pm:Life Goes On Outing
1-5pm:Childcare for affected children, and the Teddy Bear Club for children ages 2-5
1:30-3:00pmConcurrent Sessions:
Symptom Management
Grandparents/Extended Family Session
3:15-4:45pm:Concurrent Sessions:
Education andYour Child’s IEP
Understanding Grief and Family Dynamics
5:45-10:30pm:Sibs Outing and Dinner
6:00-7:30pm:Dinner
9:00-11:00pm:Trivia
9pm-Midnight:Texas Hold’Em Tournament
Saturday, July 11
7:45-8:45am: Breakfast available at Burnham’s
8:30am-Noon:Childcare for affected children, and the Teddy Bear Club for children ages 2-5
8:45-10:30am:Age-designated Sibs session
9:00-5pm: Conference Registration Open
9:00-10:45am:State of the Science for Infantile, Late Infantile, Kufs & Variants
9am-5pm: Blood Draws (for research, diagnosis and carrier testing)
9am-10am:Sibs of all ages enjoy time with Therapy Dogs
10-11:30am:Age-designated Sibs art project
10-11am:Therapy Dogs come for a visit with our Batten kids
10:45-Noon:Sib/Parent Panel is a conference tradition and is an opportunity for parents and their unaffected children to have a conversation about family dynamics
11:00-Noon:Research Open House – Batten researchers from around the globe share posters describing their latest research findings
Noon-5:30pm:Sibs Outing and Lunch
12:15-1:15pm:Lunch
1-5pm:Childcare for affected children, and the Teddy Bear Club for children ages 2-5
2:00-4:00pm:INCLLINCLUnknown Moms Session / INCLLINCLUnknown Dads Session
Newly Bereaved
Separate sessions for mothers and fathers. Parents can share experiences and frustrations, as well as offer and receive support and ideas to help on this journey
5-6pm:Preparation for the Kid’s Parade
6-6:30pm:Kid’s Parade - Affected children are announced and escorted by their siblings as they make their way into the dining room
6:30-8pm:Banquet and Presentation
8-11pm:Sibs Dollar Dance & DJ Music – This Sibs fundraiser is a family favorite. The DJ will encourage everyone to crowd the dance floor for a great time
8pm-Midnight:Hospitality Room Open
Sunday, July 12
7:45-8:45am:Breakfast available at Burnham’s
8:30-11:30am:Childcare for affected children, and the Teddy Bear Club for children ages 2-5
9:00-9:30am:Prayer Service
9:45-11:15am:Memorial Service –This reflective ceremony honors the memories of loved ones lost to Batten disease, everyone is welcome
9:45-11:15am:First Time/Newly Diagnosed Families Decompression
11:30am:Farewells