That’s a Wrap! CHLA Creates a Memorable Experience at 2019 International Exstrophy Conference

CHLA, bladder exstrophy, Bladder exstrophy conference

The 2019 International Exstrophy Conference was a huge success, mostly due to the dedication and planning of the team at Children’s Hospital Los Angeles. Our heartfelt thanks goes out to the CHLA team for orchestrating a well organized, insightful event. It was a great experience for all attendees!

Highlights of the weekend

Highlights included sessions presented by industry experts, the Courage to Shine award presentation, a kids only field trip to Warner Bros Studio, family bowling night, Wellness Fair, and break out sessions focused on all ages from birth through adulthood with special groups for family members of exstrophy individuals.

Attendees enjoyed the first ever A-BE-C Talent Show

Exstrophy individuals were invited to perform their special talents to an excited and engaged crowd. Famed artist Adam Bruno, whose family has been touched by exstrophy, performed his song “Chance to Lose It All” and emceed the event.

A few brave souls performed their Extraordinary talents!

Don’t just take our word for it!

Attendees were very open about their experience and we appreciate all the feedback. Here are a few kind words about the event (click on the circles to scroll through the testimonials):

  • “I liked the presentation by Dan Wood and speaking with Anthony Schaefer. I also like the personal experience stories and the networking opportunities. It was also extremely well organised. To Pam, the urologists, the incredible guest speakers, the volunteers, the sponsors and everyone who made the conference happen this weekend. Thank you so much, it was incredibly organised and we have learnt so much, with also a wonderful opportunity to network with families and health professionals. We have wanted to come to a conference from Australia since our daughter was born and finally made it happen this year. With sincere thanks and gratitude for a wonderful, memorable weekend.”
    The Kalkandis and McCuaig family
  • “Thank you for continuing to organize these events. It’s my only chance to be with other fighters like me. Their strength helps me to continue to be strong.”
  • “We absolutely enjoy coming every year. We always learn something new, always meet someone new and continue our friendships that we have made over the last few years. It’s like going to a family reunion.”
  • “I loved the theme of the conference. It was nice to have a change and not overloaded with everything medical-based.”
  • “I liked getting to meet other adults living with exstrophy and connecting with parents of young kids who were excited to see a (relatively) normal adult who has the same condition as their kids.”
  • “I liked the focus on mental health and development. Meeting other families was so nice and great for our mental health. My daughter loved the experience.”


Save the Date

The 2020 conference will be held in June at Johns Hopkins in Baltimore, MD. For updates on next year’s conference and early registration information, become a subscriber and follow us on Facebook!