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…

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…

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…

WEGO Health Award – Thomas Exler, Jamie Holmes & Amy Oestreicher


I am excited to announce I have been nominated for the 2016 WEGO Health Activist Awards. WEGO Health, a network of +100k patient influencers, has create the awards program to: Recognize patient influencers who have become leaders among leaders Connect patient leaders to each other, across conditions and platforms Give a big “Thank You” to all…

2016 Courage To Shine ™ – Brittney Freeman – July 9 2016


Read more about: Brittney Freeman – Teaching Others To Shine!!  Click Here 2016 Courage to Shine™ Lisha Martinez & Adam Young Award . Brittney Freeman was presented with the 2016 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday July 9 2016. Read more about: Brittney Freeman – Teaching Others To Shine!!  Click Here Brittney Nichole Freeman is…

Jon Pierroz – Adversity to Triumph


Jon Pierroz – Adversity to Triumph   Jon Pierroz interview by Courage to Shine™ and he just got married this month. Classic Bladder Exstrophy Email to Jon: Jon@courage-to-shine.org Please read Courage-to-Shine.org disclaimer!                    

Erin Kavanagh – Being Secure & Sure of Oneself is a Beautiful Thing


Note: “Being Secure & Sure of Oneself is a Beautiful Thing” originally appeared in Ostomy Canada Magazine in the Winter 2015 Issue on pages 52-53, 56.  It is used under permission from  Ostomy Canada Magazine which is the official magazine of Ostomy Canada.  Being Secure & Sure of Oneself is a Beautiful Thing   By Erin Kavanagh I…

Mindi Plumley Thayer – Triumphing Over Exstrophy


Triumphing Over Exstrophy By Mindi Plumley Thayer I was born on April 17, 1982 at 3:43 pm. I was the first child of two for my parents Dale and Nina Plumley. At birth the doctors thought I had a hernia. When they went in to repair the hernia they discovered that I had classic bladder exstrophy….

Amy Oestreicher – Turning Adversity into Gratitude


For information about TEDx Syracuse University go to Amy’s Webpage Turning Adversity into Gratitude By Amy Oestreicher I’ve been called a surgical disaster, a medical miracle, barely alive to the energizer bunny that just keep going. It was the night of our family Passover Seder – a favorite holiday of mine, reminding me of Spring,…

Caelin Mooney – Kinder than Necessary


Kinder than Necessary By Caelin Mooney My name is Caelin Mooney, I am 22 years old, a future child life specialist, an advocate for children and families, a Godmother, a sister, a cousin, a niece, a daughter… the list could go on and on with labels that pertain to me.  Along with all of these…

Rachel Fisher – Turning Fear Into Confidence


Turning Fear Into Confidence By Rachel Fisher, My name is Rachel Fisher, I’m 23 years old and I was born with classic bladder exstrophy.  My life began in New Bern, North Carolina in 1992.  My medical experience started with an immediate closure, reclosure and bladder neck reconstruction.  Unfortunately, at age four I developed blockages in…