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Center Of Excellence
Conference June 2016

BBSFA Family Conference 2016



Was hosted By Dr. Nico Katsanis and Duke University


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?
Fundraising Workshop

4:00pm Plenary: Ask the BBS Adults
Speakers: Ellyn Hunter, Tom Marker, Marty Knight

4:50pm Closing

Please direct all inquiries to: Mary Morris
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