THOMAS EXLER – Founder & Chairman of Courage to Shine


Note: In 2012, John Walsh from  Stomawise website:  http://www.stomawise.co.uk/ which is based in the United Kingdom, invited Thomas Exler to write about his story for the My Story section of Stomawise website. The following  below was submitted to be placed on the website, however it had to be edited due to the available space and here is the link the article up on the Stomawise website: http://www.stomawise.co.uk/lifestyle/my-story/thomas-exler Also at end of this blog are the links to articles from the UroMed Hometown Heroes bloghttp://uromed.wordpress.com/, which they featured Thomas Exler and Courage to Shine for 5 days in January 2012.

In February 7, 2017, I was featured on the ConvaTec Website: Me+ Community: Thomas Exler

Edited: February 10, 2017

Hello my name is Thomas Exler, from Pittsburgh, Pennsylvania, USA

Climbing the stairs at a waterfall in Iceland in May of 2011

For many years now, I have had been given a great opportunity to meet so many amazing people from all over the world, not in spite of, but because I was born with a rare birth defect called bladder exstrophy.  My life has had numerous blessings because of it, and on the whole the blessings have gratefully outweighed all the negatives I have had to personally endure.

My name is Thomas Exler and I am currently the board president (now vice president) of the Association for the Bladder Exstrophy Community (A-BE-C) www.bladderexstrophy.com , an international support network of individuals with bladder exstrophy, including classic exstrophy, cloacal exstrophy, and epispadias, through local parent exstrophy support groups, healthcare providers working with patients and families living with bladder exstrophy.

What is bladder exstrophy? The word Exstrophy is derived from the Greek word ekstriphein, which literally means to “turn inside out.” Bladder exstrophy is a malformation of the bladder, in which the bladder and related structures are turned inside out. The skin of the lower abdominal wall that normally covers the bladder also does not form properly and is separated, thus exposing the inside of the bladder to the external world. If you imagine a balloon that has been split and opened up so that the inside of the balloon is visible, you will have a picture of what has happened  –  Source: www.bladderexstrophy.com

Thomas Exler on the left at the age of 4, with his second cousin also born with bladder exstrophy, two weeks apart

Given that I was born with bladder exstrophy, I was required to make many hospital visits in my younger years of life, so therefore spending many weeks at the hospital during the summers breaks became a common summer activity.  However I was blessed to have parents, as well as an entire family, that were there to be a great source of support.  While at the same time, they treated me as they would any other member of the family, and most importantly, I received no special treatment because I was born with a birth defect.

Nevertheless in 1969, after it was realized by my pediatric surgeon, that he would be unable to use my bladder tissue.   I had surgery for a urostomy (ileal-conduit), which was a month before my forth birthday.  Then within a few months later, I again had my bladder surgically removed.  However again I was blessed,  I had a mother who was not only a new nurse, but I can remember her fondly talking about an orphaned baby boy she took care of with a colostomy during her nursing training, and who would of thought, just a few years later she would have a son who would also need a stoma.

Children’s Tri-State Ostomy Association Banquet – Pittsburgh, Pennsylvania – October 1973

Later that same year, my surgeon and my mother got together and had the idea that there must be many parents out there, who had children with stomas (ostomies), that needed support, and they founded the first organization in the world, dedicated to just children with stomas, (ostomies) and named it the Children’s Tri-State (Pennsylvania, Ohio & West Virginia) Ostomy Association which was based in Pittsburgh, Pennsylvania until it closure in 1982.

This association gave me an enormous opportunity growing up, that I would not realize until many years later.  It gave me a chance to view and meet children my own age, who were facing far more severe health issues, this not only taught me about compassion, but they also inspired me, to continue helping people that I am still doing today.  However, in an odd way, It also prevented me from asking the question, “am I alone?”  Since I always knew the answer, I was not.

While during my school years I participated in many sports, and since I grew up in America, I played organized baseball from the age of 7 until my teen years, as well as hockey and later on indoor soccer and Gaelic (Irish) Football.

After college I started working for a major hospital in the Pittsburgh, Pennsylvania area, and today I also currently working for another internationally known hospital and is where I earn my livelihood, so I am able to do have the financial resources to help others today.

Thomas Exler speaking at the 2009 ABC/HEA Exstrophy, Epispadais & Hypospadias Conference in Pittsburgh, Pennsylvania in August 2009 – On the screen is Thomas Exler as a child in the hospital with his father

Over the years, I have had the opportunity to volunteer at various medical camp programs for teens with intestinal diseases or intestinal and urinary diversions or alterations, and in 2001 I even founded the Young Adult Network under the now defunct United Ostomy Association.  In addition today I am currently still a consultant and board member to the Pittsburgh Ostomy Society and recently have been consulting, and a board member of with a new non-profit called, Jamie’s Dream Team, which helps children, adults and families dealing with life threatening illness or trauma by helping to make their dreams come true.

Speaking about living with bladder exstrophy and having a urostomy, to a surgical nursing organization in Pittsburgh, Pennsylvania in January of 2011

Consequently due to my long term involvement with many programs, I have had been given the chance to give presentations to many different groups across the United States, as well as in handful of other countries.   However no matter where it is or the culture of that location, the same questions are always asked.

Over the years, I have also become a great support of medical camp programs, or parents’ conferences or programs like Breakaway in the United Kingdom.  http://www.breakawayfoundation.org.uk/

Courage to Shine Team & Breakaway Board & Volunteers in May 2011

Therefore in April of 2011, after e-mailing back and forth with one of the founders of Breakaway, who originally contacted me personally about her daughter almost a decade earlier, I finally agreed to cross the Atlantic to the United Kingdom and to put together and lead a team of patient role models under the name Courage to Shine.  Our Courage to Shine team attended the 2011 April/May Breakaway Session of Breakaway Foundation where we participated in all the activities, while at the same time, we were there to support the parents, patients and the entire families in attendance, through our personal experiences growing up with similar challenges.

In early 2010, I founded a group called Courage to Shine, www.courage-to-shine.org which will eventually be a patients awards program as well as a website that will feature individuals who were born with genitourinary birth defects, and have also grown up to become amazing role models as adults.  Eventually this website, which was launched on the 1st of January 2012, will also feature some of the most amazing stories of individuals overcoming a range of medical issues, that myself or members of Courage to Shine will meet through our contacts or people we will come in contact during our travels.

TV interview in March of 2011

Breakaway is a residential program for young people between 4 -18 years of age, living with a bowel and/or bladder diversions or dysfunctions along with their respective families, and I highly recommend ever one at the very least financially support this wonderful project.  It is such a wonderful program that someday in the future, I would love to bring a similar program to the United States, and have already looked into some properties to hold an event like Breakaway in the USA.

It was another great experience coming to England to attend Breakaway, and every time I have had the privileged to attend one of these programs, it does not matter if it is in Australia, Canada, Germany, USA, of in the UK. The parents all have the same concerns and worries about their child’s health, and more importantly it is questions that deal with their child’s future and the fact that we can give them, that little hope, is all they are looking for, and it is a privilege and honor to attend great events like Breakaway.

: Climbing Sydney Harbour Bridge, Febuary 2006, Sydney, NSW, Australia

In 2012, Misty Blue Foster and I were invited to attend and to speak at the ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Alvia, Spain from Friday, November 23 – Sunday November 25 2012.

Courage to Shine™ Team gave motivational presentations based on their own experiences living with bladder and cloacal exstrophy, and participate in workshops during the conference, as well as interact on a personal level with many of the families who attended the ASEXVE Medical Conference.

ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Alvia, Spain – Programa encuentro medico Asexve 2012

Then on April 16, 2014, I unfortunately had a stroke, which hospitalized me for 3 days but left me frustrated that I could not go back to work, and eventually I was laid off because of it.  However I have totally recovered and moving on with my life

Therefor in early February 2015, I was informed and honor, that I would be 1 of 50 people who will be awarded the 2015 Jefferson Award for the Pittsburgh, Pennsylvania, in May 4, 2015.  It was printed in the Pittsburgh Post-Gazette on February 27, 2015. Thomas Exler – 2015 Jefferson Award – Pittsburgh Post-Gazette -Pg A6 – Feb 27 2015   Here is a link to the pictures from the Jefferson Awards presentation that was held on May 4, 2015

Thomas Exler at the 2015 Jefferson Awards

2015 Jefferson Awards

In March of 2015, I was nominated for an Everyday Hero by Values.com this is offered by The Foundation for a Better Life 

In July of 2015. I was nominated for the 2015 RARE Champions of Hope – Advocacy this is offered by Global Genes. 

Soaking at the ASEXVE Conference

Speaking at the ASEXVE Conference in Spain in Nov 2012

Although I never asked to have a stoma, and I do not know of a person that has asked before getting sick, but I do believe that having a stoma should never stop anyone from doing what they want to do or accomplish in life.  Life is wonderful, and it is not about the gifts you are given in life, it really is about how you use those gifts that is important.

In closing, I can see how far people with stomas have come, around the world, since I had my stoma surgery at the age of 4 in 1969, the products we all use have come lights years and I not just talking about with pouching systems, but across the medical industry.  However the biggest change over the years has been the ease of communications and travel to connect with others going through similar medical issues, this is the biggest and best change, because now no one has an excuse to ask, “am I alone?”

To contact Thomas Exler you can do so at texler@courage-to-shine.org or to know more about any of the groups below please go to their respective website.

Speaking at the California Bladder Exstrophy Support Team (B.E.S.T.) Annual Campout – August 2011 – South Lake Tahoe, California

In January of 2012 Thomas Exler was also featured by UroMed as a Hometown Heroes on UroMed’s Hometown Heroes Blog: UroMed Hometown Heroes Blog http://uromed.wordpress.com
Published Date: Wednesday January 25, 2012
I’m often asked, “Why is a support group so important for an individual who has a physical challenge to overcome?” The only way to get courage is to face your fears and overcome them. The benefits of courage are success, happiness and bravery. Most people run away from fear. Successful people run to fear and do the things they fear the most and overcome the challenges that most people see as impossible. Support groups like Courage to Shine enable people with challenges to see that they’re not alone. The group also allows people to meet others with the same conditions, so they can learn and help each other to overcome their problems.
Published Date: Thursday, January 26 2012
Courage to Shine LogoExlerCourage to Shine, a new project we created, was originally created to be an awards program to honor outstanding people, especially those with bladder exstrophy. We wanted to honor accomplishments in society and in the greater world. As we developed the idea, we thought that a better approach would be to feature great young people who had overcome their medical problems and could show the way, so that others could follow in their footstepsWe know there are great possibilities for individuals, in spite of their medical disabilities, who have the courage to try, once they know others have succeeded.
Published Date: Friday, January 27, 2012

Thomas Exler on the left at the age of 4, with his second cousin also born with bladder exstrophy, two weeks apart

When parents learn that their children have a medical issue like bladder exstrophy, often their dreams for those children cease, and the parents suffer along with the children. However, on the front page of the Courage to Shine website, we can show parents what their children can achieve, and what other people with the same or similar medical problems have gone on to do and become. The parents of these special children need a place where they can get information about what their children can achieve, and examples of people who’ve overcome similar challenges to prove there isn’t anything they can’t do.

These parents need to see that their children’s dreams can be accomplished and that the best way to treat their children is not as though they have disabilities, but rather that they don’t have any excuses for not being successful. If the child has siblings, don’t treat that child any differently than you do your other children. By parents focusing on what children with disabilities can do, then they’ll gain the potential to be as successful, if not more successful, than their able bodied siblings. These children have the opportunity to gain as much courage as their brothers and sisters. If these children overcome fear and learn a strong work ethic, there’s nothing in this world they can’t achieve that they want to achieve

Published Date: Saturday, January 28 2012

Climbing the stairs at a waterfall in Iceland in May of 2011

Once, I heard a speaker say, “When I became paralyzed, I didn’t spend much time thinking about the 1,000 things I couldn’t do. I began to think about the things I could do, and what a wonderful life I would have if I did those things,  instead of worrying about the ones I couldn’t do.” A wall or a mountain simply presents an opportunity to learn another way to get over an obstacle that maybe no one else has discovered yet. A wall is an opportunity to challenge your creativity, your ability to innovate and adapt, and your chance to see just how strong your work ethic really is.

Through these processes, you’ll do unbelievable things and accomplish unbelievable feats. We can prove that what I’m telling you is the truth when you hear positive stories and check out Courage to Shine. There’s always a way to solve a problem, and just because no one else has been able to solve that problem, doesn’t mean that you can’t. A man once said, “The only things in life worth doing are the things that seem to be impossible.” If we can show people with medical challenges that greatness is possible, and that there are others like them, who have obtained greatness, then we can change the lives of the medically challenged forever. A medical problem shouldn’t be used as an excuse to not find and develop the greatness that’s within you.

Published Date: Monday, January 30, 2012

: Climbing Sydney Harbour Bridge, Febuary 2006, Sydney, NSW, Australia

For the first year or two of Courage to Shine’s existence, our main goal is to reach out to people with urinary defects. We’ll also have articles about other types of challenges and the people who have had these problems and still have achieved great things with their lives. Since Courage to Shine has started with thebladder exstrophy community, we initially will be targeting young people with urinary birth defects and their parents. However, we want to show great examples of individuals who never have let their medical challenges hold them back or prevent them from becoming great.

Stomawise Website: http://www.stomawise.co.uk/
Published Date: Wednesday, January 4 2012
To contact Thomas Exler you can do so at texler@courage-to-shine.org or to know more about any of the groups below please go to their respective website.

Association for the Bladder Exstrophy Community (ABC): www.bladderexstrophy.com

Courage to Shine: www.courage-to-shine.org

Pittsburgh Ostomy Society (POS): www.facebook.com/pages/Pittsburgh-Ostomy-Society/190575250971420

Breakaway Foundationwww.breakawayfoundation.org.uk/

Jamie’s Dream Team: www.jamiesdreamteam.org

Categories: Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Post navigation

3 thoughts on “THOMAS EXLER – Founder & Chairman of Courage to Shine

  1. Pingback: Thomas Exler – My Story – From Stomawise & UroMed Hometown Heroes « ABC Update Online

  2. Pingback: MISTY BLUE FOSTER – Courage To Shine™ – Role Model of the Month for June 2012 « Courage to Shine™

  3. Pingback: World Rare Disease Day – February 28, 2013 « Courage to Shine™

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at WordPress.com.

%d bloggers like this: