Bardet Biedl Syndrome Foundation

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

BBSFA Connect 2015: Agenda

September 26, 2015

BBSFA Connect 2015 is focused on helping BBS families connect with and learn from each other in addition to having the chance to hear directly from medical professionals who treat BBS patients.

8:30 to 9:15: Breakfast and late registration

9:15 to 9:30Welcome and Overview
Dr. Robert Haws, Marshfield Clinic, and Tim Ogden, BBSFA

9:30 to 10:00:  Update on CRIBBS
Dr. Robert Haws

10:00 to 10:30Proteasome activators and current work
Nico Katsanis, PhD, Center for Human Disease Modeling, Duke University (via video)

10:30 to 11:00: CRISPR/Cas9 technology and its implications for BBS
Scott Hebbring PhD, Marshfield Clinic and UW-Madison

11:00 to 11:15: Break

11:00 to 11:30Sleep disorders and BBS
Hema Murali MD, Marshfield Clinic

11:30 to 12:00Nutrition, weight management and BBS
Tammi Timmler MS RD CD CDE, Marshfield Clinic

12:15 to 1:00  Lunch

1:00 to 2:30  Stages of Life in BBS
Rachel Stankowski PhD (moderator), Marshfield Clinic
Tim Ogden, Amy Arnesen, Jane Perry and Ellyn Hunter (childhood, teen years, adulthood)

2:45 to 3:30 pmBreak 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 

6:00: Picnic dinner
Events: Open discussion for families
Fire truck display
Seeing eye dogs interactive session
Cow/small animal petting “zoo”

To attend the conference at the Marshfield Clinic

To access live feed of conference online on September 26th

Can't make it? Please consider a donation to the Marshfield Clinic.