Updated September 20th
8:30 to 9:15 Breakfast and late registration
9:15 to 9:30 Welcome and Overview: Dr. Robert Haws and Tim Ogden
9:30 to 10:00 Update on CRIBBS: Dr. Robert Haws
10:00 to 10:30 Nico Katsanis PhD (via video)
Proteasome activators and current work
10:30 to 11:00 Scott Hebbring PhD
CRISPR/Cas9 technology and its implications for BBS
11:00 to 11:15 Break
11:15 to 11:45 Hema Murali MD
Sleep disorders and BBS
11:45 to 12:15 Tammi Timmler MS RD CD CDE
Nutrition, weight management and BBS
12:15 to 1:00 Lunch
1:00 to 2:30 Rachel Stankowski PhD (moderator)
Stages of life in BBS- Tim Ogden, Amy Arnesen, Linda and Melissa Rickard, Jane Perry and Ellyn Hunter
2:45 to 3:30 pm- Break Out Session 1
1) Raising a Daughter with BBS
2) Raising a Son with BBS
3) Diet management (adults)
4) Guardianship and social services
3:30 to 4:15 pm- Break Out Session 2
1) BBS101/Just Diagnosed, Now What?
2) Diet management (children and adolescents)
3) BBS Adults Forum
4) IEPs/504 Plans and working with schools
4:20 to 5:05 pm- Break Out Session 3
1) Ask the Doctors: Nephrology, Ophthalmology, Endocrinology, Cardiology, Sleep
2) Diet management (children and adolescents)
3) Dealing with Vision Loss
4) IEPs/504 Plans and working with schools
6 pm- Picnic dinner
Events: Open discussion for families
Fire truck display
Seeing eye dogs interactive session
Cow/small animal petting “zoo”
Games