Contact: Click Here
Courage to Shine Staff
Founder & Chairman
Thomas Exler – Pittsburgh, Pennsylvania, USA – texler@courage-to-shine.org
Thomas Exler is the Vice-President of the Association for the Bladder Exstrophy Community as well as the Founder & Chairman of Courage to Shine. Thomas has a long history in patient support group since his mother and surgeon founded the first pediatric support group for children and parents dealing with intestinal and urinary diversions or ostomies back in 1969, which was called the Children’s Tri-State Ostomy Association. He went on to volunteer at many medical camps for kids dealing with all types if intestinal and urinary procedures and diseases. He recently been given a chance to speak at many events for families dealing with all types of intestinal and urinary issues over the last few years, in more than a handful of countries, and in April/May of 2011 led a team of patient role models to Breakaway-Visits in England under the name of Courage to Shine. Courage to Shine and Courage-to-shine.org is his latest project, and hopes it will succeed in putting true patient role models only a click away from the young patients and parents it is meaning to help, by showing and giving hope through the amazing personal stories on courage-to-shine.org
Read more about Thomas Exler: Click Here
Staff & Contributor
Emily Kohlman – North Canton, Ohio, USA
Emily Kohlman is a bladder exstrophy survivor and active member of Association for the Bladder Exstrophy Community along with other bladder exstrophy support groups. Emily has been involved in providing awareness for congenital defects since her parents first joined ABC in 1995. She continued with the organization by playing a role in, “Bladder Exstrophy: A Teen Survival Guide” in 2008. In 2015, she married Cameron Kohlman, another bladder exstrophy survivor, and the two are dedicated to making a difference in the lives of children, adolescents, and adults affected by birth defects, in hopes to achieve the most fulfilling life possible.
Read more about Emily Kohlman: Click here
Contributors will be added over the upcoming months, and if you would like to consider to be a contributor please e-mail us at contact@courage-to-shine.org or e-mail Thomas Exler at texler@courage-to-shine.org
To nominate a worthy and inspirational story and/or person to be consider for the Courage to Shine – Role Model section: Please e-mail us at contact@courage-to-shine.org and and make sure you include your contact information along and the contact information of the person/group you are nominating. Also please include why you would like this person/group to be included as a Courage to Shine – Role Model, as well please include any video links or other online articles, that would support your reasons for your nominee.
To Contact – Courage to Shine
E-mail: texler@courage-to-shine.org
Phone: 412-512-3139
Courage to Shine™ 
my grandson was born with bladder exstrophy 8 years ago, here in cleveland, would love to be able for him to go a camp with other kids that are dealing with the same,he still has a tube in his belly button and he is going to have more surgergy, please let me know if ther is any camp close to us, such a great thing you are doing
Robin
Since your grandson is only 8 years of age. The Great Lakes Chapter of ABC holds a family campout in July each summer and you can read more and see a video at https://couragetoshineblog.wordpress.com/2012/03/13/family-campouts-for-bladder-exstrophy/ also when your grandson turns 11 I would recommend the Youth Rally http://www.rally4youth.org and you can read a story at https://couragetoshineblog.wordpress.com/2012/03/17/2012-list-of-camp-and-campout-programs-for-exstrophy-kids-teens-and-families/
Tom
This is my first time on this site. My son is 26 and was born with bladder exstrophy. He will not go out except with his brother. I am concerned and would like some information on a chat room of some kind for him with other young adults with his condition. We live in ohio so it would be nice to find something in the columbus ohio area. Please help.
Trying to get in touch with misty blue practically lived at Stanford first five months of life from watching her in the incubator to her body cast