19 results for tag: bladder exstrophy


Great Lakes Chapter 12th Annual Summer Campout

You are invited to join us for a weekend campout for anyone dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias and their families and friends. This is a great way to connect with other families, share in similar experiences and know that you are not alone! Dates: Friday, July 31 to Sunday, August 2, 2020 Location and Facilities:  Eby’s Pines RV Park & Campground (http://www.ebyspines.com) in Bristol, Indiana is located in the scenic forests of northern Indiana’s Amish Country.  It is just minutes from the Indiana Toll Road. Eby’s Pines has tent sites, full hook-up sites, pull-thru sites, and cabins, as well ...

The 2020 B.E.S.T. (Bladder Exstrophy Support Team) Campout

California Bladder Exstrophy Support Team (California B.E.S.T.)'s Annual Campout is a wonderful event at one of the most breathtaking locations on earth, beautiful Lake Tahoe where we gather each year for a weekend of fun. The campground is found in Toiyabe National Forest in South Lake Tahoe. It is centrally located in South Lake Tahoe and is within walking distance to Lake Tahoe. Our campout provides planned activities, crafts, organized potlucks for Friday and Saturday dinners, and speakers. If camping is not your "thing" you are still welcome to participate. There are multiple hotels near the camping site you can stay in, so you can join us ...

Expanding Our Reach

Over the past 3 years A-BE-C has helped facilitate surgeries for children with bladder exstrophy in Uganda, and trained Ugandan surgeons in India with the goal to work with Uro Care Hospital to build a medical facility where children can both undergo surgeries and receive follow up treatments. Making an Impact in Uganda The success of this collaboration has led to a five-year initiative with Uro Care Hospital, under the leadership of Dr. Stephen Wayta (Uganda) and Dr. Ranjiv Mathews (USA), in partnership with a US pediatric urological surgical team who are experts in the surgical treatment and ongoing care of bladder exstrophy.  A-BE-C is ...

Annual Meeting – Support Group Bladder Exstrophy / Epispadias

The annual meeting 2019 of the self-help Bladder Exstrophy / Epispadias Self-Help Group of Germany will be held September 13-15th.

Study to be Presented at Societies for Pediatric Urology Fall Meeting

You may remember a survey conducted earlier this year by Seattle Children's and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes. We received an overwhelming response thanks to our amazing BE community. The research team at Seattle Children’s has been focused on adding the patient perspective to the body of research on bladder exstrophy. The paper, "Patient-reported outcomes in adult female bladder exstrophy patients: A study of long-term sexual, reproductive, and urinary outcomes using social media", focused on the experience for people living with this condition from their ...

Help Us Meet the Challenge

This October, a team of America’s most experienced bladder exstrophy surgeons will be in Uganda for seven days to begin a five year initiative designed to treat these underserved children and adults and extend access to exstrophy surgery through the training of Ugandan surgeons.

Briten Douglas – Survivor and 2019 Courage to Shine Award Recipient

Briten Douglas is this year's recipient of the Courage to Shine award, setting an example with her perseverance and positive attitude throughout countless years of pain and adversity. Briten was presented with the award at the 2019 International Exstrophy Conference in Los Angeles on June 29 by Tom Exler, founder and chairman of Courage to Shine.  Thank you to Briten and her family for joining us at the conference and for sharing your incredible story! About Briten My name is Briten Douglas and I was born on October 27th in 1986 with bladder exstrophy.  That makes me 32 years old! I say that very proudly because that also makes me a ...

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

2019 Youth Rally

Each year, the YOUTH RALLY hosts kids and teens living with conditions of the bowel and bladder at a college campus for a five-night one of a kind camp experience that promotes independence, self-esteem, learning, friendship and fun! The 2019 Youth Rally will take place July 8-13 at the University of Washington in Seattle. Apply here!

2020 International Exstrophy Conference

Save the Date! Johns Hopkins Baltimore, MD June, 2020 For updates on next year’s conference and early registration information, become a subscriber and follow us on Facebook!