Dilara Arslan – A Scientist from Istanbul, Turkey


Dilara Arslan – A Scientist from Istanbul, Turkey By Dilara Arslan Hi Everybody, I am Dilara from Turkey.  I was born as likes some of you with a bladder exstrophy in 1991, İstanbul, Turkey.  To treatment of my bladder exstrophy was needed a series of operation since my born. I don’t remember my early ages….

Damon Little


Damon Little Damon Little is a National Gospel and Grammy Winner Artist, I (Thomas Exler) ran into his at the United Ostomy Associations Conference.  During his childhood he has many surgeries and live with a colostomy for years. Damon Little: http://www.damonlittle.com/ Damon Little/ Be Alright-2019: https://youtu.be/3jFWCwXaA-c Courage To Shine™, Turning Adversity to Triumph, Courage to…

Anja Christoffersen – Behind The Smile


Note: Anja Christoffersen released her book Behind The Smile in October of 2018.  You can view her website at Anja Christoffersen.  By Anja Christoffersen At 28 weeks of pregnancy, my parents found out I had a life-threatening condition that malformed most bodily systems. Devastated, my parents began a search for answers. There was no cause identified and…

Paul Young – I’m Going to Talk About Me


Note: Paul Young wrote about his experiences for The Urological Foundation in the United Kingdom Paul Young is an award winning stand up comedian and writer who has written for shows including Top Gear, Miranda, and Not Going Out. He works under the stage name of Paul Kerensa. I’m Going to Talk About Me By Paul Young…

Kaitlin Morris – Finding Bravery in Unexpected Places


Note: I first met Kaitlin, when I came to Sydney, New South Wales, Australia to speak at the 2010 BEECH Australian Community Conference in June, 2010 – Thomas Exler YouTube: Mrs. Morris  Finding Bravery in Unexpected Places By Kaitlin Morris Hi there, I am Kaitlin (Sheedy) Morris,  I was born on April 15, 1992 with classic…

Rachel Jury – Rocking2Stomas.co.uk


Rachel Jury of Rocking2Stomas.co.uk and her blog. By Rachel Jury My name is Rachel, and I am a 31-year-old woman from the UK who has been ill now for 10 years. I am a proud double ostomate with a permanent urostomy and ileostomy! It has been a journey, to say the least not just physically but…

2018 Courage to Shine™ – Thomas McKeon Ludlow – June 9, 2018


13-Year-Old Tommy Ludlow Receives Courage To Shine™ Award Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge into opportunity. Tommy received the honor, in part, because he is by all available accounts the first bladder exstrophy patient to hike to Mt. Everest Base Camp. The 12-day…

2017 Courage to Shine™ – Spencer Daniel Kimbro – June 10 2017


2017 Courage to Shine™ Lisha Martinez & Adam Young Award – Spencer Daniel Kimbro – June 10 2017 Spencer Daniel Kimbro was presented with the 2017 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday June 10, 2017. Spencer is a 16-year-old born with classic bladder exstrophy, cloacal exstrophy, spina birida, and many…

2019 International Exstrophy Conference in Los Angeles, California, USA


2019 International Exstrophy Conference in Los Angeles, California, USA Save the dates now! The 2019 International Exstrophy Conference will be at the Children’s Hospital Los Angeles on Friday, June, 28 through Sunday, June 30, 2018. More details to be announced in the coming months. Website: The Association for The Bladder Exstrophy – 2019 International Exstrophy Conference  More details…

Tommy Ludlow – Climb up to Mt. Everest Base Camp!!


Tommy Ludlow – Climb up to Mt. Everest Base Camp!! 12-year-old Folsom boy climbs Mount Everest despite medical condition Tommy was born with exstrophy, a rare condition that occurs in about 1 of every 50,000 living births, according to the Urology Care Foundation. Author: Frances Wang Published: 3:13 PM PST January 2, 2018   As the Ludlow…

Emily Kohlman – Turning Scars Into Beauty Marks


Note: In 2014 Emily wrote a blog for Courage to Shine™ the following is  an update to that blog from 2014 with can be found here:  Emily Broeren Kohlman – My Journey!!! Turning Scars Into Beauty Marks By Emily Kohlman My husband and I met at four years old at Johns Hopkins Hospital in Baltimore, Maryland, scheduled to…

Kylee Hunter- You Can Call Me “Smiley Kylee”


You Can Call Me “Smiley Kylee”  By Kylee Hunter You know your life will be interesting when one of the first words out of the doctor’s mouth at your birth is, “I think that’s a bladder”. My name is Kylee Hunter, I’m almost 18, and I was born with bladder exstrophy, a rare birth defect that…

Kylee Hunter –


By: Kylee Rebecca Hunter I was born with bladder exstrophy, a rare abnormality where the bladder and associated structures are improperly formed. Those with this anomaly experience multiple surgeries, incontinence, and urinary tract infections. Because of the stigma of physical differences and incontinence, they often experience emotional problems in addition to their physical difficulties. Recognizing…

The 2019 B.E.S.T. (Bladder Exstrophy Support Team) Campout


Friday, August 2 – Sunday, August 4, 2019 Location: Campground By The Lake, South Lake Tahoe, CA, USA Address: 1150 Rufus Allen Blvd, South Lake Tahoe, CA 96150, USA IF you’d like to stay in a hotel, accommodations are close by.  Hotel Azure Tahoe  – This hotel is very nice and it’s almost across the street from the…

2017 International Exstrophy Conference In Philadelphia, Pennsylvania, USA


2017 International Exstrophy Conference In Philadelphia, Pennsylvania, USA Save the dates now! The 2017 International Exstrophy Conference will be at the Children’s Hospital of Philadelphia on Friday, June 9 through Sunday, June 11. More details to be announced in the coming months. Website: The Association for The Bladder Exstrophy – 2017 International Exstrophy Conference    From…

Matt Elkins – Angling over Adversity


Angling over Adversity By Matt Elkins My name is Matt Elkins; I’m 40 years old; I’m married; I live in Spencerville, Ohio; I’m an environmental specialist by trade; and I have a passion for hunting and tournament bass fishing. That pretty much sums me up in as few words as possible. What is missing from…