Bardet Biedl Syndrome Family Association

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

2018 BBSFA Conference Agenda

June 30-July , 2019
Salt Lake City, UT
Closest Airport: Salt Lake City Airport (SLC) 
Location: Station Park, Farmington, UT. Conference hotel and Conference Center are all at one location. Public transport is easily available from the airport to the conference venue.

For more information about the conference or to register click here.

Agenda

Note this agenda is subject to change.

Saturday, June 30th

9:00 am   Welcome, BBSFA Board and SLC Conference Team

9:15 am  What We’re Learning about BBS from CRIBBS
Dr. Bob Haws, Dr. Jeffrey Pomeroy (Marshfield Clinic) and Ellyn Hunter

10:15 am Hunger Control in BBS: Setmelanotide Trial
Fred Fiedorek, Rhythm Pharmaceuticals

11:15 am  Break

11:30 am Breakout Sessions: Ask the Experts

Nephrology with Dr. Haws (Marshfield Clinic)

Neurology and Sleep Medicine with Dr. Murali (Marshfield Clinic)

Exercise and Nutrition with Abby Hendricks (BBS mom and nutritionist)

Autism and BBS with Karen Fairchild (Former President, Utah Autism Society)

Ophthalmology with Dr. Bernstein (University of Utah)

12:30 pm Lunch

1:30 pm BBS Genes and Proteins
Dr. Erica Davis, Duke University

2:30 pm The BBSome: What It Looks Like, What It Does, and Why It Matters
Dr. Max Nachury, UC-San Francisco

3:30 pm Break

3:45 pm Breakout Sessions: Ask the Experts

Nephrology with Dr. Haws (Marshfield Clinic)

Neurology and Sleep Medicine with Dr. Murali (Marshfield Clinic)

Exercise and Nutrition with Abby Hendricks (BBS mom and nutritionist)

Emotional Health for Families with Special Needs Children with Karen Fairchild (Family Therapist)

Ophthalmology with Dr. Bernstein (University of Utah)

4:45 pm Wrapping Up the Day
Tim Ogden, President, BBSFA

5:45 pm Depart for “BBS Family Reunion” Banquet from hotel (transport provided)


SUNday, JuLY 1st

8:30 am Rescuing Retinal Cells in BBS Mouse Models
Ying Hsu, University of Iowa

9:00 am Vision Research Update (via Videoconference)
Dr. Jacque Duncan, UC-San Francisco

Steve Rose, Chief Science Officer, Foundation Fighting Blindness

10:00 am Breakout Sessions

BBS Adults
BBS Young Adults
IEP Workshop
Guardianship Workshop
Emotional Health for Families with Special Needs Children with Mike Fitch (Family Therapist)

11:00 am Fundraising for BBS Research: A Practical Toolkit
Tim Ogden, President, BBSFA
Alex Ogeka, Vice-President, BBSFA

11:30 am Where We’ve Come From, Where We’re Going: The Past and Future of the Family Association
Linda Rickard, Claudia Parker, Ruth Dameron, Mary Morris, Tim Ogden and Francis Lestel

12:15 pm Lunch

1:00 pm Breakout Sessions

Raising a Girl with BBS
Raising a Boy with BBS
Fundraising Workshop

Coping with Vision Loss    
Mental Health for People with BBS with Mike Fitch (Family Therapist)

2:00 pm Why are BBS Symptoms So Variable? Via Videoconference
Dr. Nico Katsanis, Duke University

3:00 pm The Future of the BBSFA, and Officer Elections
Tim Ogden, President, BBSFA

4:00 pm Conference Ends