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Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

Agenda for Connect 2015

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”