Countdown to the 2017 International Exstrophy Conference!

Details for Attendees



Shuttle service will be provided from hotel to hospital and back to hotel as follows:

  • Saturday and Sunday mornings from 6:45 am thru 7:45 am
  • Saturday following the program from 5:00 pm thru 6:30 pm
  • Sunday following the program from 11:30 am thru 12:45 pm


Click to download detailed Agenda for the 2017 Exstrophy Conference

Friday, June 9

6 to 8pm – Welcome Pizza Party & Registration, Ben Franklin Ballroom, Sheraton Philadelphia University City Hotel

Saturday, June 10

  • Childcare Services: 7:45 am – 12:00 pm and 12:50 to 5pm – Children ages 1 through 7 years of age will gather for playtime and aged- appropriate activities.
  • Youth Track: 8:00 – 10:30 am – Activities, Games for ages 8-18 years old for those who choose not to stay in main meeting space, and from 1 0 5pm, an afternoon of fun at Lucky Strike Lanes. Transportation provided, buses leave at 1 pm sharp!
  • Teen & Parent Track: 8:00 – 10:30 am – Sessions as described below
7:00 – 7:45 amContinental BreakfastAtrium Area (outside of Conference Rooms)
8:00 – 8:20 amWelcomeDouglas Canning, MD Chief of the Division of Urology and Professor of Urology University of Pennsylvania’s Perelman School of Medicine.
8:20 – 8:40 amConference Theme and A-BE-C UpdatePamela Block, Executive Director, Association for the Bladder Exstrophy Community
8:40 – 9:30 amKeynote Speaker, Spencer KimbroCourage to Shine Award presented by Thomas Exler, Vice President, A-BE-C
9:30 – 10:00 amBreak/Vendor Viewing
10:00 – 10:30 amYouth and Family Camps – Learn about 3 different camp options for patients

and families

April Gimlen & Ann LaFond Youth Rally

Rebecca and Kylee Hunter, BEST Campout

Barbara Neilsen, Canada Ostomy Camp

10:30 – 11:00 amPatient Experiences: Two adults share their storiesJoe Redman, Entrepreneur

Anna Sigrún, Social Worker Childrens´ Hospital of Iceland



SATURDAY BREAKOUT SESSIONS (11:15 am – 12:00 pm)

Parents of newborns and toddlers with Bladder Exstrophy and Cloacal ExstrophyMerritt M. Jensen, PhD2012
Entering the school setting; collaborating with your child’s schoolDiane Price, LCSW6040
Teen & adult males with Bladder Exstrophy and Cloacal ExstrophyJohn Gearhart, MD & Joe Redman2010
Tween & teen girls with Bladder Exstrophy and Cloacal ExstrophyEmily Haddad, LCSW & Joy Kerr2004
Unique challenges for older adults living with Bladder Exstrophy and Cloacal ExstrophyMichael Mitchell, MD & Tom Exler4058
Special considerations living with Cloacal Exstrophy and Fecal Reservoirs in Cloacal Exstrophy patientsBradley Kropp, MD & Barbara Neilson, MSW5040
Siblings of individuals with ExstrophyAndrea McGinnis3040
Spouses of Individuals with ExstrophyJohn Kryger, MD & Kathi Exler3058
Pelvic and core rehabilitation for continenceAndrea Branas, PT, DPT, MSE, CLT4040


12:00 – 1:15 pmLunch (CTRB Main Cafeteria)
12:45 pmBus loading for Lucky Strike Lanes


1:15 – 1:30 pmSocial Media Study Results – AdulT Males Speak OutPamela Block, A-BE-C and Seattle Children’s Hospital
1:30 – 2:00 pmMIBEC – A multi-institutional approach to treating patients with bladder exstrophyJoseph Borer, MD, Director Bladder Exstrophy Program; Assistant Professor of Surgery at Boston Children’s Hospital.

John Kryger, MD, Medical Director, Pediatric Urology Children’s Hospital of Wisconsin

2:00 – 2:30 pmThe role of co-surgeon in exstrophy


John Gearhart, MD, Professor and Director of

Pediatric Urology at Johns Hopkins Children’s

2:30 – 3:00 pmBreak/Vendor Viewing
3:00 – 3:30 pmStem Cell Research, A Johns Hopkins StudyHeather Di Carlo, MD, Assistant Professor of Pediatric Urology and Co-Director of Pediatric Urology Research at the Charlotte Bloomber Children’s Center, Johns Hopkins Hospital
3:30– 4:00 pmBladder augmentation and long term care with CICCaleb Kovell, MD, Assistant Professor of Clinical Urology in Surgery Perelman Center for Advanced Medicine
4:00 – 4:30 pmA look at Exstrophy through the

decades- what I’ve learned treating exstrophy patients

Michael Mitchell, MD, Specialist Pediatric Urology Children’s Hospital of Wisconsin
4:30 – 5:30 pmOpen Panel DiscussionModerator: Aseem Shukla, MD Joseph Borer, MD

Heather DiCarlo, MD John Gearhart, MD Caleb Kovell, MD Bradly Kropp, MD

John Kryger, MD Michael Mitchell, MD

Sunday, June 11

7:00 – 7:45 amContinental BreakfastAtrium Area (outside of Conference Rooms)
8:00 – 8:30 amBladder Exstrophy Down UnderKaty Hargreaves, BEECH Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias
8:30 – 9:00 amTexas Support GroupBrandi McSwain, Founder and Fundraiser
9:00 – 10:00 amTeen PanelModerators: Emily Haddad, LCSW &Barbara Neilson, MSW
10:00 – 10:30 amBreak
10:30 – 11:00 amTaking the Show on the Road: The Nuts & Bolts of Creating a Global Multi-Institutional Collaboration to treat Bladder ExstrophyAseem Shukla, MD, Director of Minimally Invasive Surgery, Department of Urology, Children’s Hospital of Philadelphia
11:00 am -11:30 pmAfrica: A Need for Multi-National Collaboration & TrainingJanet Gibson, A-BE-C Africa Liaison
11:30 pmClosing Remarks and Group PicturePamela Block, Executive Director, A-BE-C

Douglas Canning, MD Chief of the Division of Urology and Professor of Urology in Surgery at the University of Pennsylvania’s Perelman School of Medicine


Sheraton Philadelphia University City Hotel is the official conference hotel. The discounted rate for a standard room is $159/night plus tax, available until May 10, 2017, subject to availability. Reserve your room(s) early online or by calling 215-387-8000. Be sure to state that you are with the Association for the Bladder Exstrophy Community conference.

Please Provide Your Consent

The conference sessions will be recorded so that we can make them available in the future to other patients, parents and clinicians. Will you please provide consent for you and your family to appear in the recording by completing this short form?

Consent Form


We are grateful for a growing list of conference sponsors, each committed to supporting the mission of A-BE-C. Without their support the conference wouldn’t happen!