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…

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….

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…

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…

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…

Kiersten Kelly – An Angel’s voice overcoming adversity – Part 1 of 2


Editor’s Note: I (Thomas Exler) had the pleasure of meeting Kiersten Kelly at a fundraiser for Jamie’s Dream Team on March 23, 2013, and I was so impressed with her, not only the way she presented herself, but also in her vocal talent, so please sit back and enjoy this amazing story from an international YouTube sensation…

World Rare Disease Day – February 28, 2013


The Association for the Bladder Exstrophy Community (ABC) for the first time has become a partner for World Rare Disease Day in the USA. – WORLD RARE DISEASE DAY – FEBRUARY 28, 2013 For more information click on the fliers below are go to http://rarediseaseday.us/                  Bladder Exstrophy is one of about 7,000 rare diseases listed by NORD (National…

Courage to Shine™ – Tour III – Spain – November 2012


Courage to Shine™ – Tour III – Spain – ASEXVE Medical Conference, Avila, Spain – November 23-25, 2012 News Release: Courage to Shine™ Team to Attend ASEXVE Medical Conference in Avila, Spain from November 23 –25, 2012 In early 2012, Thomas Exler and Mist Blue Foster were invited to attend and to speak at the ASEXVE (Asociación española…

12th Annual California Bladder Exstrophy Support Team Campout – August 3 – 5, 2012


12th Annual California Bladder Exstrophy Support Team Campout Friday August 3 – Sunday August 5, 2012 Campground by the Lake, South Lake Tahoe, California, USA By Thomas Exler This past August 3-5  2012, 15-20 families living with bladder exstrophy, came  together  in South Lake Tahoe, California, for the 12th Annual California Bladder Exstrophy Support Team (B.E.S.T.)…