Newest Stories:

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

As the Ludlow family revisit their Mount Everest memories on New Year’s Day, this Folsom family is still in awe of their trip, especially 12-year-old Tommy.

To view more : Tommy Ludlow – Climb up to Mt. Everest Base Camp!!

Emily Kohlman – 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 have the same surgery within days of one another. Cameron called Ohio home. Wisconsin was mine. Both of us were bound to a hospital bed, introduced by the man who gave us back our health and gave us one another, world-renowned surgeon, Dr. Robert Jeffs. We share a birth defect called bladder exstrophy. Back in 1995, our parents could not have guessed this defect would abundantly reward us with a lifetime of blessings.

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2018 International Exstrophy Conference in Cincinnati, Ohio, USA

Friday, June 8 to Saturday, June 9, 2018

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

Friday, July 27 to Sunday, July 29, 2018

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

Friday August 3 to Sunday August 5 , 2018

Awards:

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 skeletal anomalies. After the family was told Spencer would not survive to delivery, Spencer came into the world on June 21, 2000 in Spokane, Washington, weighing 4 pounds 12 ounces. He was flown to Seattle Children’s Hospital in the early hours of June 22nd to see Doctor Grady and Doctor Mitchell.

To view more of 2017 Courage to Shine™ Lisha Martinez & Adam Young Award – Spencer Daniel Kimbro – June 10 2017

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

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.

Brittney Nichole Freeman is a 27-year-old born with classic exstrophy. Born Brittney Nichole Godfrey on August 2nd,1988, Brittney had her primary major reconstruction surgery at the Children’s Hospital of the University of Oklahoma in 2000, as a patient Dr. Bradley Kropp. He is, in her eyes, a miracle worker. She loves to proudly show off his handiwork in the form of her awesome belly button; that is also her cathing stoma. She loves that she is able to catheterize, even if it can at times be very painful. As a child she was constantly wet and wore pull ups until she met Dr. Kropp and his nurse Lori in 1999…