Hosted by Richard Alan Lewis M.D., M.S. Professor, Departments of Ophthalmology, Medicine,Pediatrics, and Molecular and Human Genetics

at Cullen Eye Institute, Baylor College of Medicine
Houston, Texas
June 13 and 14, 2008.

Conference fees:

$30 for LMBBSA members and $40 for non-association members.

Tentative Schedule

Friday Evening

7:00pm - 9:00pm: Family Social Evening - Get acquainted!

Saturday

9:00-9:10 AM: Introductions: Rev. Tommy Marker and Mr. John Weir for the LMBBSA, and Dr. Richard Lewis for Baylor College of Medicine.


9:10-9:30 AM: History and Overview of BBS: Who were Laurence, Moon, Bardet, and Biedl? What is this complex condition and why does it take so long to get answers?
Richard Alan Lewis, M.D., Ophthalmology


9:30-9:50 AM: Speech Pathology and Therapy: What are the purposes of speech therapy? How do parents find, choose, and judge the effectiveness of a speech therapy? Should there be research to understand this problem in LMBBS?
Ross Tonini, AuD., Texas Children's Hospital


9:50-10: 10 AM: Growth, Obesity, and Weight Control: Why do BBS folks grow heavy in infancy? How do we prevent or then manage obesity in children and in adults?
Kathleen J. Motil, M.D., Ph.D., Texas Children's Hospital, the Children's Nutrition Research Center, and Baylor College of Medicine.


10:10-10:30 AM: Gastrointestinal Problems in LMBBS: Diarrhea, constipation, and Hirschsprung disorder. How to we recognize and manage them, and should we investigate them further?
Bruno P. Chumpitazi, M.D. Texas Children's Hospital


10:30-10:50 AM: Break

10:50-11:10 AM: Kidney Problems: What are the frequent issues in LMBBS? What should parents and families know about detecting and monitoring kidney problems? What to do when kidney failure occurs: dialysis or transplantation?
Eileen D. Brewer M.D., Texas Children's Hospital.


11:10- 11:40 AM: Autism: What is it, how do we recognize it, why is it so popular now, and how do we manage it? Is there incentive to understand similar features in LMBBS?
Diane Treadwell-Deering, M.D., Texas Children's Hospital and Baylor College of Medicine.


11:40 AM-12:00 N: Questions and open discussion

12 N- 1:00PM: Box Lunch

1:00-1:45 P.M.: Genetics of BBS: 15 (!) Genes and Counting!
How is the BBS puzzle fitting together?
Nicolas N. Katsanis, Ph.D., Johns Hopkins University.


1:45-2:30 PM: Solving the LMBBS puzzle at the level of the cell:
What is really going on?
Erica Davis M.S., Johns Hopkins University


2:30-3:00 PM: Queries and Worries: Everyone's chance to Ask the Doctor�:
Dr. Katsanis, Dr. Davis, Dr. Lewis, and the Speakers


3:30 - 4:00PM: Coping with BBS: psychosocial issues, the family dynamic,
and everyday challenges
Julie C. Sapp, ScM, CGC, Genetic Counselor,
National Institutes of Health

Dinner Break


7:00 PM+ LMBBS Roundtable: Additional useful information including a round table discussion where those with BBS and their family members ask and answer each other's questions.

Location:

Cullen Eye Institute, Baylor College of Medicine, Houston Texas

Accommodations/hotel registration:

Houston Marriott Medical Center
6580 Fannin Street
Houston, TX
Call 1-800-228-9290 for reservations. Mention that you are booking for the LMBBSA conference.

A limited block of rooms has been set aside for the meeting at the special rate of $85 per night for a two-night stay. This block of rooms will be held for reservations at the special rate until May 30, 2008. After that date, regular Marriott rates apply. You can come early and stay longer by notifying the hotel of your desire in conjunction with the June 13 and 14, 2008 guaranteed rooms, but possibly at the usual Marriott rates, depending on availability of those rooms on the other dates. Tell the hotel that you are coming for the LMBBS meeting and want the LMBBS room block. Marriott has complimentary vans that will take people anywhere within a 2 mile radius. Three restaurants, a guest laundry with three coin washing machines and four coin dryers, indoor swimming pool, and a large exercise room are available for guests. This is a handicapped accessible hotel. The hotel connects to the medical center by an overhead-enclosed walkway.

Each participant is responsible for booking hotel accommodations.
In order to get an accurate room count, please call Monique Lamb at (405) 921-7059 or email her at mobrina2001@yahoo.com.

Meeting Registration/Fee:

To register for the meeting, mail a check or money order made out to the LMBBSA, in the amount of $30 per person for members and $40 per person for non-members to:

Nancy Coleman-Coffey
3920 St. Philippe Drive
Lake Charles, LA 70605

Mail payment no later than May 23, 2008. This fee will pay for a light breakfast and a box lunch on Saturday, refreshments during the meeting and at the social on Friday night and various other minor costs. (Restaurants are closed on Saturdays in the immediate area.) No one will be admitted to the meeting without prior registration.

For each attendee, provide the following:

Full name
Address
Phone
Email address
Age range: Less than 10
10 to 16 years
Adult

On receipt of your payment, you will receive a packet with maps and other details.

Cancellation policy:

No meeting registration refunds after May 30, 2008; prior to May 30 refunds are subject to a $10 service charge per person.

Meeting information

The conference provides the opportunity to learn the latest medical information BBS, learn how people cope with various aspects of the disorder, and meet and work with other parents and children of all ages with the disease and knowledgeable medical professionals. Typically there are persons with BBS from several years old to 50 years old in attendance and this gives parents an opportunity to talk to BBS adults and learn from their experiences as well as meeting with parents of children of all age groups. Please register early! We have only 99 seats available for the conference. When these are booked we will not be able to accept added registrations. Priority is given to members of the LMBBSA and those with or living with LMBBS. In addition, the block of hotel rooms at the special rate of $85.00 is limited, so register at the hotel as soon as possible.

For your arrival, there will be an LMBBSA desk in the lobby, with your name tags and instructions for the meeting, from noon to 9 pm on Friday and from 8 to 9 am on Saturday.

Airports and transport:

Airport shuttle service to Marriott: Call 713-523-8888 (always use area code even for local calls) From George Bush International: 6:15 am to 11:15 pm, return: 5:15 am to 6:15 pm, Houston Hobby airport: from: 7 am to 10 pm and return: 5:30 am to 6:30 pm. You buy a ticket each way for $20 International airport, $15 Hobby. Going back you can buy the ticket at the gift store in the hotel and the clerk will make a reservation. Shuttles generally run every hour. Taxi fare to airports: approx $25 to Hobby, $45 to International.

Hotel Parking:

Hotel parking is self-park for $2 per hour up to $9 per day, but if you leave at any time during the day the counting starts again. Valet parking is $19.95 per day, which gives you unlimited in and out privileges. You can pay this by charging it to your hotel bill.

Meeting parking:

Use hotel parking or there is a Methodist hospital parking lot very close to where we meet, about 150 ft. down the hall, parking garage number 7 on John Freemen Street. You pay for your parking at $9 per day cash.

To join the LMBBS Association
click here