Summer events strengthen exstrophy community and build support

Bladder exstrophy patients, families, and health care professionals gathered around the world to strengthen community and build support for each other at many summer events in 2018. Here’s a few highlights!

Families gather around the campfire at the Germany Exstrophy Conference

2018 International Exstrophy Conference

Cincinnati Children’s and A-BE-C kicked off the summer with the 2018 International Exstrophy Conference. Over three amazing days in Cincinnati this summer, families and health care providers joined together to share experiences, gain knowledge and support each other.

“Walking into the first night, you walk into a group that is like family,” said Melissa, a participant. “The conference is not only educational but provides a safe place to BE yourself and know that everyone understands, and that’s invaluable.”

Dr. Pramod Reddy and his team did amazing job organizing all the speakers and making sure everything went smoothly. A special thanks goes out to A-BE-C’s board member, Joe Redman for sponsoring an amazing night at the Reds game!

Johns Hopkins 32ndAnnual Picnic

Johns Hopkins held its 32nd Annual Picnic in Baltimore and patients of Dr. Gearhart, young and old, gathered to catch up, share stories and support one another.

This yearly event is attended by families from all over the world. A-BE-C’s executive director, Pamela Block, received a surprise introduction to the little girl adopted from Vietnam, making it the highlight of the picnic for her.

The team from Johns Hopkins answers questions from parents at the 32nd Annual Bladder Exstrophy-Epispadias Picnic

Germany Exstrophy Conference

Alice Ambrose, a nurse with bladder exstrophy and founder of the A-BE-C Great Lakes Annual Picnic, and her husband Brad traveled all the way to Germany to represent A-BE-C at the 20th anniversary of the Germany Exstrophy Conference.

Alice Ambrose representing A-BE-C at the Germany Exstrophy Conference

They were hosted by Julia Petschallies, Dr. Heiko Reuter, and 95 fellow bladder exstrophy “family members.”  Their picnic always draws a great mix of all ages of bladder exstrophy families, from newborn to seniors whom for most part, are meeting others for the first time with this condition, even as an adult.  Julia, a parent of a child with BE who founded the annual event, considers their picnic as meaningful as Christmas or Easter!

Celebrating the 20th anniversary of the Germany Exstrophy Conference

Exstrophy Family Support Day

Children’s Hospital Los Angeles (CHLA) held its first Exstrophy Family Support Day this summer with more than 40 participants.

Children were able to play with and pose for pictures with CHLA Therapy Dogs and had a day filled with arts, crafts, and making friends.

First annual Exstrophy Family Support Day at Children’s Hospital Los Angeles

Parents and relatives were able to connect, network, share stories, and build relationships with each other in a friendly, caring, and supportive environment. “Being able to talk to other people who understand what I am going through was so meaningful,” was said by one participant and captured the theme of the event.

Congrats to Evalynn Vasquez, MD, MBA, Director of our Bladder Exstrophy and Complex Reconstruction Program, and her team for a job well done for pulling together a special day.

Patients, families and representatives from Children’s Hospital Los Angeles at the innagural Exstrophy Family Support Day

First Multi-Institutional Bladder Exstrophy Consortium (MIBEC) Picnic 

Our summer picnic road trip ended with a trip to Children’s Hospital of Wisconsin for the First Annual Multi-Institutional Bladder Exstrophy Consortium (MIBEC) picnic. MIBEC, a unique research group of The Children’s Hospital of Philadelphia, the Children’s Hospital of Wisconsin and Boston Children’s Hospital, is dedicated to improving outcomes for children with all forms of exstrophy.

For the past five years, each of these three hospitals has alternately served as host site for scheduled surgeries with observation, commentary, and critique by surgeons from the other sites.

This summer, the hospitals and families joined together to share their collective experiences and surgical outcomes with the aim to will increase the long-term quality of life of those living with bladder exstrophy. Pamela Block rounded out the program by sharing the impact A-BE-C is making all over the world.

Members of the MIBEC, a unique research group with members from three hospitals that is dedicated to improving outcomes for children with all forms of exstrophy

Have an exstrophy event you’d like A-BE-C to help promote or feature? Let us know! Contact us.