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2009 HEA/ABC Conference Schedule

Schedule as of 8/3/09

All events (except for the HEA Pre-Conference events, the Friday night Meet & Greet and the Saturday night dinner) will be held at the Children's Hospital of Pittsburgh Conference Center.
bullet  Children's Hospital of Pittsburgh Conference Center
          3rd floor, John G. Rangos Sr. Research Center
          Children's Hospital Drive
          45th Street & Penn Avenue
          Pittsburgh, Pennsylvania 15201
bullet  412-692-6438  
bullet  Directions  bullet  Map  
bullet Conference Center Virtual Tour (look at the Research Center tour—second of the four virtual tours)


Pre-Conference Events—August 14, 2009

When What Where Who
10:00 am - 12 noon HEA Board of Directors Meeting Wyndham Hotel Board members and others interested in improving HEA
12:30 pm - 2:00 pm Networking Lunch Wyndham Hotel ABC and HEA board members and leaders of related groups
2:00 pm - 4:00 pm HEA Board of Directors Meeting Wyndham Hotel Board members and others interested in improving HEA


Conference Events—Friday, August 14, 2009

When What Where Who
5:00 pm -
8:00 pm
Conference Registration Children's Hospital of Pittsburgh Conference Center Lobby ABC/HEA conference committee participants
5:30 pm - 6:00 pm Welcome Auditorium Barbara Ward, ABC, & Chris Arnold, HEA
6:00 pm - 7:00 pm

Bladder Exstrophy: Survival Guide "Live"

Video, speeches, and panel discussion

Auditorium Geoffrey Neizgoda, William Reiner, MD, & Cast Members
Brittney, Godfrey, Freedman,
Cameron, Kohlman
Panel Members: Alyse Barth, Ariel Christensian, Madeline Smith, Emily Broeren, David Foulds, Misty Blue Foster, Thomas Exler III
Dating & Sex: A Survival Guide Conference Rooms B & C Tiger Devore, PhD, Psychotherapist and Sex Therapist, New York City
7:00 pm - 7:45 pm Motivational Speakers Auditorium

Cara Larson Wadman, RN
Paul Young

Hypospadias Treatment & Reconstruction Options Conference Rooms B & C Ricardo Alvarez, MD, Hypospadias Institute of the Caribbean, Barranquilla, Colombia
7:45 pm - 8:15 pm Parents' Break Out Session Auditorium Barbara Ward & Franci Newhouse (facilitators)
Adults' Break Out Session Conference Room A Cara Larson Wadman, RN, & Billy Deegan, HEA Exec Dir (facilitators)
Child/Teen Meet & Greet Conference Rooms B & C Dr. William Reiner & Jimmy Simons (facilitators)
8:15 pm - 8:45 pm The Night Before (video) by James Cole Auditorium James Cole
  Child/Teen Meet & Greet Conference Rooms B & C Dave Ward
9:00 pm Adult Meet & Greet at a local pizza restaurant Del's Restaurant
4428 Liberty Avenue
Pittsburgh (Bloomfield)
Hosts: TBA of ABC and Billy Deegan of HEA

 

Conference Events—Saturday, August 15, 2009

When What Where Who
7:30 am - 8:00 am Child/Teen Program Registration, Conference Registration Conference Center Lobby ABC/HEA conference participants
8:00 am - 8:15 am Welcome Auditorium Barbara Ward, ABC, & Chris Arnold, HEA
8:15 am - 8:45 am What Are Hypospadias, Epispadias, Bladder Exstrophy, and Cloacal Exstrophy? Auditorium CHP urologist TBA (to be announced)
8:45 am - 9:30 am Psychosocial Aspects of Child Development in Exstrophy Auditorium William Reiner, MD, University of Oklahoma Health Sciences Center, Oklahoma City
9:30 am - 9:45 am Demonstration: How to Participate in the Online Chat Rooms Conference Rooms B & C Doug Jasper & Ed Weaver, Jr., HEA Chat Room leaders
  Adult B.E. Patient from the UK Auditorium Margaret Lloyd
9:45 am - 10:00 am Break    
10:00 am - 10:45 am Post-Op Management Protocol for Newborn Exstrophy Children & Cloacal Parent Video Auditorium Bradley Kropp, MD, University of Oklahoma Health Sciences Center, Oklahoma City
Informed Consent & Medical Privacy (continues through 11 am) Conference Rooms B & C Anne Tamar-Mattis, Advocates for Informed Choice, & Arlene Baratz, MD, of Accord Alliance
10:45 am - 11:30 am Preparing Your Child for Bladder Neck Reconstruction Auditorium John Gearhart, MD, & Arlene Gerson, PhD, Johns Hopkins University, and Arlene Gerson, PhD
  Lunch on your own - Group 1 (11am - 12 noon) Cafeteria will be open Those who want to hear Dr. Gearhart's Epispadias talk should go to lunch at this time
  Lunch on your own - Group 2 (11:30 am - 1 pm) Cafeteria will be open Those who want to hear Dr. Gearhart's Bladder Neck Reconstruction talk should go to lunch at this time
12 noon - 1 pm Epispadias: Medical Issues Auditorium John Gearhart, MD, Pediatric Urologist, Johns Hopkins University
1:00 pm - 1:45 pm Stone Prevention/ Stone Management (continues through 2:00 pm)
Auditorium Steven Docimo, MD, Children's Hospital of Pittsburgh, or TBA
  Infections, Fistulas, Strictures— Complications of Surgery Conference Rooms B & C William Kennedy, MD, Pediatric Urologist, Stanford University Medical Center
1:45 pm - 2:30 pm Minimally Invasive Surgery in Urology (2:00 pm - 2:30 pm) Auditorium Steven Docimo, MD, Children's Hospital of Pittsburgh
Talking About Genital Differences     Conference Rooms B & C Tiger Devore, PhD, Psychotherapist and Sex Therapist, New York City
2:30 pm - 2:45 pm Break    
2:45 pm - 3:30 pm Environmental Exposures: Effects on the Developing Genitourinary system Auditorium Richard Grady, MD, Seattle Children's Hospital
Hypospadias, Epispadias, and Exstrophy: Classroom and School Considerations Conference Rooms B & C Alana Sullivan, BEECHAC, and Betty Engel, HEA
3:30 pm - 4:15 pm Cloacal Exstrophy – Short Bowel Auditorium Rob Squires, MD, Children's Hospital of Pittsburgh Division of Pediatric Gastroenterology
Cloacal Exstrophy - Intestinal Transplants Auditorium George Mazariegos, MD
Topic TBA Conference Rooms B & C Barbara Neilson, Social Worker, Hospital for Sick Kids, Toronto
4:15 pm - 5:15 pm Intermittent Catheterization Techniques and Bladder Irrigations in Exstrophy Patients Conference Rooms B & C Jake Klein, MS, CPNP, University of Oklahoma Health Sciences Center, Oklahoma City
Cloacal Exstrophy Patient Panel Conference Room A  

International Reports (Will continue on Sunday, 8:00 am - 8:40 am)

- John Szura, Work in the Philippines

- Christine Sylva & Alana Sullivan, Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias Australian Community (BEECHAC)

- Joan Oboh, Osetale Foundation International, Lagos, Nigeria

- Karen Brumel, UK

- Ricardo Alvarez, MD, Hypospadias Institute of the Caribbean, Barranquilla, Colombia

Auditorium  
5:00 pm - 5:15 pm Child/Teen Program Pick Up TBA  
5:15 pm - 7:00 pm Time on your own    
7:00 pm - 10:00 pm Banquet (doors open at 6:30 pm) St Nicholas Greek Orthodox Cathedral
Cathedral Hall
419 South Dithridge St.
Pittsburgh (Oakland) PA
St Nicholas Greek Orthodox Cathedral  

 

Conference Events—Sunday, August 16, 2009

When What Where Who
7:30 am - 8:00 am Children's Program drop off Conference Center Lobby
8:00 am - 8:40 am

Welcome and Continuation of International Reports

- Youth Rally Committee, Jimmy Simons (20 minutes)`

- Hannes Vogt, German Exstrophy Group

- Canadian Ostomy Camp, Barbara Neilson (5 minutes)

Auditorium
8:40 am - 9:00 am Motivational Speaker Auditorium Ed Weaver, Jr.
9:00 am - 9:45 am Adult Female Patient: Cloacal Exstrophy
Auditorium Misty Blue Foster
Fathers' Roles Conference Rooms B & C Genevieve Kilman, Child Life Specialist, Hospital for Sick Kids, Toronto
9:45 am - 10:15 am How to Talk to Kids about Upcoming Medical Procedures Auditorium Genevieve Kilman, Child Life Specialist, Hospital for Sick Kids, Toronto
Q & A Conference Rooms B & C William Kennedy, MD, Pediatric Urologist, Stanford University Medical Center
10:15 am - 10:30 am Break    
10:30 am - 11:30 am Coping Measures for Dealing with Disorders of Sexual Development Auditorium Billy Deegan, LMSW, CASAC, Executive Director of HEA
Female Issues Conference Rooms B & C Cara Larson Wadman, RN
Live from Pittsburgh! - online HEA chat Conference Room A Doug Jasper & Ed Weaver, Jr., HEA Chat Room leaders
11:30 am - 12:00 noon Break Out Session for Parents Auditorium Barbara Neilson & Genevieve Kilman, Hospital for Sick Kids (facilitators)
Break Out Session for Teens Conference Room A or TBA Doug Jasper & Tom Exler (facilitators)
Break Out Session for Adults Conference Rooms B & C Billy Deegan, HEA Exec Dir (facilitator)
12 noon - 12:30 pm Membership Meeting: ABC Auditorium Barbara Ward, ABC
Membership Meeting: HEA Conference Rooms B & C Chris Arnold, HEA
12:30 pm - 1:00 pm Conference Evaluation and Summary: ABC
Auditorium Barbara Ward, ABC
Conference Evaluation and Summary: HEA Conference Rooms B & C Chris Arnold, HEA
1:00 pm - 1:30 pm Slide Show and Closing Remarks Auditorium Barbara Ward, ABC, & Chris Arnold, HEA
1:30 pm Child/Teen Program pickup TBA