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…

2018 International Exstrophy Conference in Cincinnati, Ohio, USA


2018 International Exstrophy Conference in Cincinnati, Ohio, USA Save the dates now! The 2018 International Exstrophy Conference will be at the Cincinnati Children’s Hospital on Thursday, June, 7 through Saturday, June 9, 2018.   More details to be announced in the coming months. Website: The Association for The Bladder Exstrophy – 2018 International Exstrophy Conference  Please note that this…

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 2018 B.E.S.T. (Bladder Exstrophy Support Team) Campout


Friday August 3 to Sunday August 6, 2018 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.  Inn by the Lake – This hotel is very nice and it’s almost across the street…

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…

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…

The 2018 A-BE-C Great Lakes Chapter 10th Annual Summer Campout


2018 A-BE-C Great Lakes Chapter 10th Annual Summer Campout Friday, July 27 to Sunday, July 29, 2018 – You are invited to join us for a weekend campout with families dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias.  This is a great way to connect with other families, share in similar experiences and know…

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….