June 24-25, 2016
Duke University, Durham, NC
Closest Airport: Raleigh/Durham International Airport (RDU)
A shuttle from the airport to the hotel and back will be available on Thursday, Saturday evening and Sunday morning for a nominal fee.
To register click here.
Agenda
Note this agenda is subject to change.
Friday, June 24th
9:00am Welcome
Dr. Nico Katsanis, Dr. Erica Davis, Tim Ogden
9:10am Plenary: The BBS Foundation and Family Association: Past, Present and Future
Speaker: Tim Ogden, President, Bardet Biedl Syndrome Foundation
10:00am Plenary: CRIBBS: Past, Present and Future
Speaker: Dr. Bob Haws, Marshfield Clinic
10:50am Break
11:00am Plenary: BBS Research at the University of Iowa
Speaker: Dr. Kamal Rahmouni, University of Iowa
12pm Lunch
1:00pm Plenary: Investigating Weight Management in BBS
Speaker: Dr. Jeff Pomeroy, Marshfield Clinic
2:00pm Plenary: BBS Research: Past, Present and Future
Speaker: Dr. Nico Katsanis, Duke University
3:00pm Break
3:15 Breakouts: Ask the Doctors (and Lawyer)
Dr. Haws (Nephrology) and Dr. Rokey (Cardiology): BBS Management
Dr. Katsanis: Understanding BBS Research
Dr. Davis: Understanding Gene Therapy and Stem Cell Therapy
Planning for the Future: Special Needs Trusts and Guardianship
4:15pm Breakouts: Ask the Doctors (and Lawyer)
Dr. Haws and Dr. Rokey: BBS Management
Dr. Katsanis: Understanding BBS Research
Dr. Davis: Understanding Gene Therapy and Stem Cell Therapy
Planning for the Future: Special Needs Trusts and Guardianship
6:00pm Banquet
Saturday, June 25th
9:00 Plenary: What You Can Do to Advance BBS Research and Treatment
Speaker: Victoria Babb
10:00 Breakouts: BBS Life
College and Career: Joy Ravenel and Mike Halm
Raising a Boy with BBS
Raising a Girl with BBS
Speech Therapy
Fundraising Workshop
11:00 Understanding BBS Genes and Proteins
Speaker: Dr. Erica Davis, Duke University
12:00 Lunch
1:00pm Vision Research at the Foundation Fighting Blindness
Speaker: Dr. Stephen Rose, Foundation Fighting Blindness
2:00pm Breakouts: BBS Life
Mental Health for BBS Adults
IEPs
What it Takes to Be a Parent of a Child with BBS
Fundraising Workshop
3:00pm Breakouts: BBS Life
Coping with Vision Loss
Newly Diagnosed Families: What Now?
What it Takes to Be a Parent of a Child with BBS
Fundraising Workshop
4:00pm Plenary: Ask the BBS Adults
Speakers: Ellyn Hunter, Tom Marker, Marty Knight
4:50pm Closing
Please direct all registration inquiries to: Mary Morris