Conference Agenda

Get to know your sponsors: ABC Medical, CompactCath, Coloplast, Oklahoma City Boathouse Foundation, OU Medical Center and 180 Medical. This conference couldn’t happen without them.

2016ConferenceSponsors

AGENDA

Friday 6 – 8 pm – ALL

6-8 pmRegistration and Pizza Party – all families and individuals welcome!

Sponsored by Coloplast

Embassy Suites: 741 N Phillips Ave, Oklahoma City, OK 73104

 

Saturday 7 am – 5 pm – PARENT TRACK

7 -7:45 am2nd FloorRegistration and BreakfastOU Children’s Hospital: 1200 N. Children’s Avenue

Samis Education Center, Main Auditorium, 2nd Floor

8 – 8:15 am2nd FloorWelcome & A-BE-C UpdatePamela Block, Executive Director, Association for the Bladder Exstrophy Community
8:20 – 8:40 am2nd FloorAgenda and Conference ThemeBrad Kropp MD, Pediatric Urology, University of Oklahoma Medical Center
8:45 – 9:30 am2nd FloorExstrophy Across the Life Span

“Promoting Resiliency”

Barbara Neilson MSW, RES. Dip. S.W., RSW

Clinical Social Worker, Pediatric Urology, The Hospital for Sick Children

9:30 – 10 am2nd FloorNew Horizons: Research Updates & Groundbreaking Innovations for Exstrophy PatientsHeather N. Di Carlo, M.D, Assistant Professor of Pediatric Urology and Co-Director of Pediatric Urology Research at the Charlotte Bloomberg Children’s Center, Johns Hopkins Hospital

John Gearhart MD, Professor and Director of Pediatric Urology at Johns Hopkins Children’s Center

10 -10:45 am2nd FloorHidden Seams: Living with Bladder Exstrophy Across the DecadesAdult with Bladder Exstrophy
10:45 am -12 pm

 

1st FloorThe Patient Experience

“What we want our doctors to know”

Break Out Discussions

 

 1st FloorAdults with Bladder Exstrophy and Cloacal ExstrophyTom Exler and Scotty Hixson
 1st FloorTeens, with Bladder Exstrophy and Cloacal ExstrophyBarbara Neilson MSW and Dylan Doane
 1st FloorTweens, with Bladder Exstrophy and Cloacal ExstrophyEmily Haddad
 1st FloorParents of Children with Bladder ExstrophyDiane Price LCSW and Pamela Block
 1st FloorParents of Children with Cloacal ExstrophyWilliam Reiner MD and Susan Golliver
 1st FloorSiblings of individuals with ExstrophyKatie Dillard, CLS and Lily Block
 1st FloorSpouses of Individuals with ExstrophyKathi Exler
    
12 – 1 pm2ND FloorLunch- Keynote Speaker

Unsinkable Spirit: The Power of Human Resiliency”

Cindy Coney, Ambassador of Hope and Author of The Wild Woman’s Guide to Living with Chronic Illness

Courage to Shine Award presented by Thomas Exler, Vice President of A-BE-C

1 – 1:30 pm Break
    
2 -2:30 pm

 

2nd FloorFrom Circle Time to Lecture Hall: Patient and Provider Perspectives Along the Educational SpectrumDiane Price, LCSW, Clinical Social Worker, Department of Urology, Boston Children’s Hospital

Erin Mello, parent of child with Bladder Exstrophy

2:30 -3:00 on2nd FloorSexual Health and Fertility in Young Adults & Adults with ExstrophyDoug Canning MD, Chief of the Division of Urology and Professor of Urology in Surgery at the University of Pennsylvania’s Perelman School of Medicine
3 -3:30pm2nd FloorSurgical Issues in the Adult BE PopulationAntoine Khoury MD, Chief of Pediatric Urology, Children’s Hospital of Orange County and Children’s Urology Center, University of California-Irvine Medical Center
3:30 -4:00 pm2nd FloorThe Psychosocial Effects of Parenting a Child with a Genitourinary DiagnosisCortney Wolfe-Christenson PhD, Department of Pediatrics, OU Children’s at OU Health Sciences Center
4 – 5 pm2nd FloorOpen Panel DiscussionPhysician Panel – all

 

Saturday 7 am – 5 pm – KID TRACK

8 am – 12 pm1st FloorPlay & ActivitiesOU Children’s Hospital: 1200 N. Children’s Avenue 

Children ages 6 months through 7 years old will gather for playtime and aged appropriate activities

8 – 10:30 am1st FloorActivities and GamesChildren ages 8-12 years old will enjoy age appropriate activities and games
8 – 10:30 am1st FloorVideo Project in the Teen RoomTeens ages 13-18 are invited to work with child-life specialists to create a special video. Children ages 10-12 are invited to participate. Signed waivers will be required.
    
12 – 1 pm2ND FloorLunch- Keynote Speaker

Unsinkable Spirit: The Power of Human Resiliency”

Cindy Coney, Ambassador of hope and author of The Wild Woman’s Guide to Living with Chronic Illness

Courage to Shine Award presented by Thomas Exler, Vice President of A-BE-C

1 – 1:30 pm Break
    
1:30 – 5 pm

 

 

 Dragon Boat Races and

Water Games

Children ages 8-18 – BRING sunscreen, hats, catheter supplies, BE READY to get WET

Water and snacks will be provided. Assistance with cathing plan will be provided.

OU nursing staff meet in atrium to be picked up by shuttles for boathouse.

BUS LEAVES FROM CHILDREN’S HOSPITAL ENTRANCE

BOATHOUSE DISTRICT – 725 South Lincoln BLVD

BUS RETURNS AT 5 PM

 

1:30 – 5 pm1st FloorPlay & ActivitiesChildren ages 6 months through 7 years old will gather for playtime and age appropriate activities

Sunday 8 – 10:30 am – ALL

8 – 9:30 amBreakfast and Round Table DiscussionsOU Children’s Hospital: 1200 N. Children’s Avenue

Samis Education Center, Main Auditorium, 2nd Floor

9:45 – 10 amYouth Rally: Connecting and Building FriendshipsApril Gimlem and Ana Gimlen LaFond
10 – 10:30 amClosing Remarks and Group PicturePamela Block, Executive Director, Association for the Bladder Exstrophy Community

Brad Kropp MD, Pediatric Urology, OU Medical Center