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!                     Advertisements

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…

Jessica Sanchez – Embracing Bladder Exstrophy


Embracing Bladder Exstrophy By Jessica Sanchez My name is Jessica Sanchez.  I am 26 years old, born and raised in Washington State and I was born with classic bladder exstrophy.  But bladder exstrophy is not who I am, it’s just a part of me.  I am a daughter, a sister, a mother, a wife, a…

Jearlean Taylor – Story of Triumph


New: On January 17, 2019 – Jearlean Taylor’s Story was featured on CBS News Online, and on Fox News Online. Note: In 2013 Jearlean Taylor was awarded the 2013 awarded as Great Comebacks™ East Coast recipient (Rochester, NY) – 2014 awarded as Great Comeback™ National recipient (Nashville, TN) and here is the her story on the Great…

2016 International Exstrophy Conference In Oklahoma City, OK, USA


Friday July 8 – Sunday July 10, 2016 Save the dates: July 8-10, 2016! Plan to join the A-BE-C community of families and health care providers for three days in Oklahoma City this coming July! The 2016 event is hosted by A-BE-C in partnership with the University of Oklahoma Children’s Physicians. Venue Details coming soon Oklahoma City, OK United…

The 2016 B.E.S.T. (Bladder Exstrophy Support Team) Campout


Friday August 5 to Sunday August  7, 2016 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…

Kathi & Tom’s Wedding – Nov 27 2015


The Wedding of Kathi Kulka and Thomas Exler on Friday November 27 2015 Hotel: Pittsburgh Marriott North 100 Cranberry Woods Drive,  Cranberry Township  PA  16066 $ 109.00 USD/Per Night + Tax Book your group rate for Kulka-Exler Wedding Block Location Map How to get here from PITTSBURGH INTERNATIONAL AIRPORT From EAST From WEST From NORTH…

The B.E.S.T. Campout – July 31 – August 2 2015


The B.E.S.T. Campout July 31 – August 2 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. The campground is found in Toiyabe National Forest in South Lake Tahoe. It is centrally located in South Lake Tahoe and is…

A-BE-C Seattle Summer Exstrophy Conference – August 1 2015


Join us in Seattle on Saturday, August 1st for a full day conference for the entire family. The free event will include morning education sessions with bladder exstrophy specialists and supervised arts and crafts for kids, followed by afternoon entertainment and picnic. More details will be available soon. If you plan to attend please register now….

Thomas Exler – 2015 Jefferson Awards – May 4 2015


On Monday May 4 2015 – Thomas Exler received the Jefferson Award for his work with Jamie’s Dream Team, the Association for the Bladder Exstrophy Community, Courage to Shine and the Pittsburgh Ostomy Society. Previous  Page: Thomas Exler – Founder & Chairman of Courage to Shine                

Great Lakes 7th Annual Summer Campout


July 24 – July 26, 2015 “A great way to connect with other families, share in similar experiences and know that you are not alone!”   The Great Lakes Chapter of A-BE-C invites all families dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias to the 2015 campout. The weekend includes a picnic lunch, evening…

Brittney Freeman – Teaching Others To Shine!!


By Brittney Freeman Hello world, I am Brittney Freeman.  I am 26 years old and born and raised in Oklahoma.  Its interesting the phrase born and raised because we all say it.  Except we are not all born the same, some of us are born on a special days such as Christmas, or maybe in…

Emily Broeren Kohlman – My Journey!!!


By Emily Broeren First and foremost, my name is Emily Rose Broeren.  I am 23 years old, 5 foot 4, and have blonde hair and blue eyes.  I was born and raised in Kaukauna, Wisconsin, but now live in Massillon, Ohio.  My family means a great deal to me and are some of the most…

Courage To Shine™ – Tour IV – USA – June 24 – August 10 2014


Press Release Courage to Shine™ Team to tour the United States from July 24 through August 10 2014 July 25 2014 ABC Campout in Bristol, Indiana & August 1-3, 2014 at the California B.E.S.T Campout in South Lake Tahoe, Nevada with additional events to be added Pittsburgh, PA, USA, June 17, 2014:  Thomas Exler, vice-president…