Monthly Archives: March 2012

ENRIQUE ESCAJADA – Courage To Shine™ – Role Model of the Month for March 2012


Enrique Escajeda of California has been named the March 2012 – Courage to Shine – Role Model of the Month.

In his honor we have reprinted his story below from January 26, 2012

———————————————————————–

Enrique Escajada – Aerialist Overcomes Adversity to Fly

Published on January 26, 2012

Aerialist Overcomes Adversity to Fly

by Enrique Escajeda

Hello, My name Is Enrique Escajeda and I was born with Bladder Exstrophy. For those that don’t know bladder exstrophy is when a person is born with their bladder on the outside of the body.  It’s a complicated ailment that demands many surgeries especially throughout childhood. The reason for my post hear would be that despite all that I happen to be a very physically active individual holding over 5 jobs in physical performance. Some wonder, how does one such as myself, enter a world such as this with a bed ridden history that’s so extensive?  I suppose the only answer I have for that is my view on choices and control. i owe much of my perspective to my mother due to the fact that if it wasn’t for her I’m sure I wouldn’t be doing the things I am today or even thinking the way I do.  So here is my story in how my mom raised me followed with the dark adolescent period and then how her old tactics brought me to where I am today.

When I was a child she noticed that whenever I was in the hospital (which was a lot) doctors and nurses would never ask me if they could take my blood or remove my stitches or bandages. They would all tell me what they were going to do and when they would do it.  Nothing was ever my choice and I didn’t have any control with what they did to my body. It was then that she began to give me small choices. Whenever she saw an opportunity my mother would ask me to make little decisions with 2 choices.  Most often it was about where I wanted to eat. Did I want McDonald’s or Carl’s Jr.?  It was small but gave me a sense of what was within my control. Later this became a fun little game for me. Whenever my mom would ask me to do something I would respond with “do I have a choice?” If it was about cleaning my room though the answer was usually NO.

Read more about Enrique Escajeda, please go to the original posting of the story at https://couragetoshineblog.wordpress.com/2012/01/26/enrique-escajada-aerialist-overcomes-adversity-to-fly/

© Copyright 2012 Courage to Shine™

Categories: Award Recipients, Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Joanna Burgess – Joy’s Way – A Journey of Survival, Hope and Inspiration


Editor’s Note: Courage to Shine™ is honored to present the original story of Joanna Burgess’s amazing and inspirational life.  Joanna originally submitted the following story to be published in a major national magazine, but the magazine elected not to publish it, however their loss is Courage to Shine’s gain.  Joanna Burgess is a nurse, a cancer survivor, a wife and the 2011 Great Comebacks® South Region Award Recipient and you can find out more about Joanna Burgess at here

Joy’s Way – A Journey of Survival, Hope and Inspiration

By Joanna J. Burgess

Joanna Burgess

As I stand at the podium, looking out over an audience of my nursing colleagues and people who have survived life changing illnesses, a memory from long ago comes to mind.  In my memory I feel peaceful, surrounded by a darkness that is full of flecks of sparkling light. I have a sense that I am floating.  I see myself reaching, extending my right arm toward some form of light.  I feel content. I am flying toward something unknown, and yet somehow known.  I am like an angel, with the tips of my wings resting on water, reaching up to move forward yet seeing ripples in the water below created by the part of me that is not yet ready to take flight. I breathe and I am home.  Whether a dream or vision I cannot say, yet I have had this memory since long before I could articulate it.  The memory exists in the periphery of my mind, and if I try to see it too clearly or directly, the image fades and then vanishes. But more important than the vision itself, I have carried throughout my life the memory of the feelings evoked by this vision. The essence of those feelings is in the knowing that I do not walk alone. In the decorated banquet hall in Chattanooga, Tennessee, I again want to reach my arm up to the source of the light, to say thank you. Thank you for getting me to this place.  I want to steadily and calmly express all that I need to say of hope, survival and gratitude.  I hold up my forefinger in front of the 200 waiting faces, a sign that I need a minute. I take a deep breath and start to tell my story.  It is the reason I have been asked to be here and to be a face of inspiration to others.

As a little girl I loved new shoes. Every Easter I would get a gift, a new pair of fancy shoes to wear with my new Easter dress, hat, and gloves. My father was the Methodist minister of our community and we lived in a parsonage home where my family’s house was connected to the church by a small foot bridge.  I can see myself, six years old, when I received my first pair of red patent leather dress shoes.  I dance, clickity-clack clickity-clack tap tap tap, on the foot bridge – the place where I always initiated my new shoes.  For me, that foot bridge was symbolic of a connection between two worlds – my home where I had the intimacy of family, and my church where I found a community of loving arms always ready to scoop me up. The foot bridge was the perfect place to celebrate my life with dance.  Clickity-clack clickity-clack tap tap tap. I’m smiling and laughing in wonder and awe at the most spectacular shoes I have ever seen.  No one would have guessed watching me in that moment of apparent delight that I also danced with a longing to meet someone who was just like me.

In December of 1965, after I had just turned three, my mother started noticing blood in my urine.  A trip to our local family doctor would change all of our lives. My parents were told that I had a very rare form of bladder cancer with a 10% survival rate. I can only imagine what my parents must have felt hearing that collection of words. (I would learn later in life after obtaining my medical records that the cancer had a name – rhabdomyosarcoma, meaning a fast growing highly malignant tumor of the soft tissues).  My father was a young new minister in upstate NY and my mother was a kindergarten teacher at a local school.  They had no medical background and had never faced a medical crisis. My parents were asked to place the trust of my life into the hands of the medical professionals. They had no other options.  My father would later tell me that handing your child over to the unknown rocks the foundation of your world. They had to make the choice to agree with decisions made by my medical team that would affect my life in known and unknown ways.  Feeling broken and torn, my father went to a small chapel and screamed to God, pleading that my life be saved.  At Boston Children’s Hospital, in the ward where my crib-like bed was, I would sense that same anguish again and again from the parents of other children, children with cancer, burns, and other life altering physical traumas. Instead of screams, they were whispered prayers in the night over sleeping children. I believe that I absorbed the energy of those thoughts and feelings, from parent to child and child to parent, into my subconscious ultimately shaping the person that I would become.

Boston Children’s Hospital was a four hour drive from my home in upstate New York.  My cancer therapy included investigational chemotherapy sponsored by a private organization affiliated with the hospital and high doses of cobalt radiation which caused third degree burns on my lower back.  Treatment also included the removal of my bladder and the creation of a urostomy, a way to divert urine by connecting the ureters to a conduit made out of the small bowel which is then brought to the outside of the abdomen through a surgically created opening called a stoma. A bag is worn over the stoma to collect the urine.

People ask about my memories of that time.  I tell them that I mainly remember the “fun” things about having cancer.  I would spend countless hours in the “go-carts,” a special kind of wheel chair designed for wheeling the children around the hospital corridors and grounds. My father would wheel me up and down the long hallways and sing to me with his deep booming minister’s voice, “Train to the farm, chugga chugga choo choo.”  There were mountains of cards from my church that my parents would read to me and I remember my sister bringing me a cherished gift of one of her beloved dolls.

Joanna Burgess at the beach

But the treatments had many side effects that would continue to manifest for years.  My father became the primary caretaker of my ostomy and radiation burns.  When my burns were at their most severe state, he would have to sleep by my side at night to make sure I didn’t roll over and disturb the bandages. Later, in my growth years, I experienced bone pain, and difficulties with my colon causing many “stomach aches” and trips to the emergency room. For each of these events my father would end up reliving the pain of the day he learned of my cancer diagnosis. In a very real sense, he became a wounded warrior.  His devotion to the care of my physical wounds was courageous but it truly left him heartbroken to see the pain I endured. To this day it is still a very raw experience for him. Even now, on the brink of turning 80, he still cannot talk about this experience without crying.  He has told me that he has never fully recovered from his own emotional wounds from my cancer therapy, and that he really does not want to, for those wounds are an integral part of him. They have shaped him into the person that he wants to be, a sensitive father, husband and caretaker of the people that reach out to him in his community.

My mother’s gifts to me were very different than my father’s. Like so many people who come face to face with a terrifying medical diagnosis, she was terribly afraid of my ostomy and my burns. Because of this fear, and my father’s willingness to bear that burden for her, she was actually better able to see me beyond my illness. Her distance from my wounds allowed her to see my greatness without any limitations. Together we would get lost in a world of great imagination, storytelling, dance, creativity, music and art.  This gave me a freedom to joyfully explore and embrace my life. My mother said when I was born, she saw and felt joy. So she chose Joy for my middle name. And she would make certain that cancer would not erase my joy.  Dancing on that footbridge in my little red shoes – anyone could see that she was succeeding. When I was about 8, my mother and I created a small hospital in our basement. My little doll beds were lined up into two rows. We made IV bottles from empty drink bottles and tubing I found in my father’s workshop.  Some of the beds had oxygen tents made from plastic wrap.  All of my stuffed animals had their own charts where I recorded their vital signs. My mother and I made up names of diseases that we put on empty pill bottles.  I immersed myself into this world we had created in the basement and all I wanted to think about was becoming a nurse.  As I grew older my mother worked out a way for me to change my clothes without revealing my ostomy and bag. She then encouraged me to go to slumber parties. She encouraged me to learn to play the piano (really a must for a minister’s daughter) and to play the flute in the concert band and even the marching band. And when I was chosen for the lead in my junior high school play, she helped me learn my lines. These many small accomplishments established in me a foundation for the self confidence I would need later on in my life.

In that little homemade basement hospital, a seed was sown that in 1981 would come to fruition when I was accepted into nursing school at West Virginia Wesleyan College.  I completed my BSN in 1985. My first nursing position was at Duke Hospital in the Department of Pediatrics.  It was then that I obtained my medical records from Boston Childrens and first saw the word “rhabdomyosarcoma” as my diagnosis. This “rare cancer,” as I had always heard it referred to, had a name! For the first time I felt a personal connection to this particular cancer and in an odd way felt as if I had discovered a treasure buried deep in a pile of medical records.  I had wanted to know this cancer and I had needed it to have a name – and now it did. I wanted to better understand how it had become a part of me and how it had affected my life.  I stood transfixed, holding those papers as I began to appreciate what I had survived.

During my first year of nursing I had the opportunity to work with a three year old boy who had been newly diagnosed with rhabdomyosarcoma.  He was facing many of the same things that I faced -chemotherapy, radiation therapy and a urostomy.  His parents, although both in the medical field, were nonetheless devastated by the diagnosis.  Like my own parents, they too were fearful of the diagnosis and fearful of their son having a urostomy, believing that it would change his personality and limit his opportunities.  A good friend encouraged me to share my story with them.  I had never before shared this part of my life with anyone beyond my family and close friends. But seeing this family’s daily devastation moved me.  I walked into their room, a “normal looking” nurse, and walked out with a lifelong bond and connection.  We remain in contact to this day sharing letters and stories and being a support for each other.  They have given me insight into what my parents must have faced and I have offered them hope and guidance along their own journey.

By the time I was thirty, my body began to significantly break down, a result of the high dose cobalt radiation. These were things that were not anticipated back in 1965. I was experiencing bone necrosis in my hips and would ultimately need to have hip replacement surgery. My right leg had developed lymphedema and had swollen to double its normal size. Both conditions were beginning to cause me difficulty in walking and it was not known if surgery would restore my ability to walk comfortably or even allow me to walk at all. Furthermore, I was beginning to experience colitis symptoms which at times were unbearable.  Fearful about my future, I was not yet ready to face the medical decisions ahead of me.  At times in my life when I have felt uncertain of what to do I have tended to take a pause and retreat to an entirely different path. I had always wanted to experience life in a different culture and suddenly an opportunity came my way. I had been given the name of a nurse practitioner in Honduras who ran a medical clinic and was looking for assistance. Despite my growing medical problems, I knew that I needed to be there.  Packing up my personal medical supplies, a book of Spanish medical vocabulary and a guidebook called When There Is No Doctor.  I went to Honduras and found myself living high above the clouds in the Merendon Mountains where I lived for seven months.  My work at the clinic involved keeping the daily events organized and dispensing countless amounts of cold medicine and anti parasitic drugs.  Although it took me 45 minutes to make the 10 minute walk between the clinic and the home I shared with the nurse, I made my way, step by step, every day.

Although it was the medical work at the clinic that called me to Honduras, it became the love of the Honduran people that kept me there in spite of my increasing medical problems.  These were happy people who sat in darkness at night in their mud and straw homes and shared the stories of their lives. They taught me to make tortillas on their mud stoves. They showed me how to get good rest swinging in a hammock. The children sang and danced around me in their bare and calloused feet and with an innate compassion, they walked with me step by step at a slow pace up and down the steep roads.  They helped me learn the endurance that I would need to face all the surgeries that were coming my way.  In their small church they would sing, “I will walk with the wings of angels; I will walk and not grow weary.” These would become the words that I would remember as I returned home to face my first surgery and the years of healing to follow.

Over the next two years, I ended up having multiple surgeries beginning with the anticipated bilateral hip replacements for bone necrosis. But beyond that, and not expected was plastic surgery to my lower back to replace skin destroyed by radiation burns, bilateral aortic bypass grafts for necrosis of the main blood vessels to my legs, and a colostomy for radiation induced colitis. Prior to having the colostomy surgery I sobbed in the hospital waiting room on my sisters shoulders.  I didn’t know if I could handle another surgery, especially one that would cause yet another alteration of my physical body.  I tell people that this is the part of having cancer that I truly remember; the difficulties of emotionally preparing for surgery, facing unknown outcomes and excruciating pain and then the years of recovery that would follow.  It would leave me unable to work for almost 20 years.

It was over the long course of my healing that I began to recall memories of my childhood experiences that had been pushed into my subconscious mind. I remembered being with other sick children who had returned to the hospital for a “check up”.  We would be taken one by one behind closed doors to have an IV started. I remember hearing the screams of the children and seeing the worried looks of parents waiting for them. At around the age of five, I chose to not cry during these painful IV sticks so that I wouldn’t make others uncomfortable.  I also remember the nights of anguish I would feel in preparing for the trip to Boston for those return checkups.  As I relived these and other memories I began to release those unshed tears from so many years before and to grieve for the losses I had experienced.  I ached for the trauma my father had experienced.  I longed to know the girl that would have been had she never gotten sick. I had once been told that my small 4’11” frame would have actually stood tall at 5’9”.  Where was that girl?? I wanted her back. I wanted a “normal” life free from pain and surgery.  I had lost my joy so beautifully bestowed by my mother.  Finally one night, in the depths of pain and exhausted from tears, once again I saw that light from long ago. It lingered in my bedroom until I felt peaceful and comforted. I felt that it was telling me that I would find my joy again.  I just needed to ask for it and believe once again in my greatness.  It came to my mind that my life really was a series of beautifully chosen paths of self discovery, a steadfast walk, and a journey.  I had survived a life altering illness and had grieved my losses.  I was ready to run toward life again and I wanted to understand my life.

Joanna Burgess and Ross Stocks on their Wedding Day

Unable yet to walk after my hip and back surgeries, I became intrigued by the healing arts.  I studied massage therapy and through this discipline I came to learn a treatment for lymphedema which greatly improved my condition, restoring my leg to a more normal size.  This stirred a passion in me to become an advocate for patients with lymphedema which in turn led me to volunteer my time partnering in the creation of a private lymphedema clinic, the first one in North Carolina.  Following my passion and seeking joy was beginning to touch every level of my being.  I was not merely a wounded body, I was a body, mind and spirit remembering who I wanted to be, with a purpose to heal and be healed.

Finding a purpose in life was as lifesaving for me as were my family and the many friends who nurtured me along the way.  However, despite always being surrounded by people who loved me, I felt a deep loneliness.  Most of my friends and colleagues were dating, getting married and starting their own families. I knew that having children would not be a possibility for my life and I often wondered if anyone would ever truly love a person with two ostomies and significant scars mapping out a life of physical illness.  Recognizing that I needed assistance I sought out a life coach who helped me to navigate the world of dating.  She encouraged me and validated me as a loving person who deserved to be loved.  As my self confidence began to grow, it would be a change of perception that would become my true miracle when on a nature based retreat I learned to use nature as a symbol for my life.  I was in Evergreen Colorado, high up among the bristle cone pine trees which stand bent and disfigured. Although they are not tall and straight, they survive the harsh climate by bending and twisting according to the way the wind moves them.  Their strength and stamina for enduring even the harshest of conditions have made them among the oldest living organisms in the world. I came to see these trees as beautiful and a symbol of my own survival. I came to know my truth; that I too was uniquely beautiful.  I believed that one day I would find love and that person would also see me as truly beautiful.  Five years ago I met my husband who has been a firm foundation under my feet. He loves me completely including my ostomies, my unique way of walking and my swollen leg.  Maybe it is the engineer in him but I actually think he finds it all quite fascinating.  I don’t know what it is about love, but it has also physically changed me.  When I first met my husband I weighed 90 pounds.  I have since gained 15 pounds!  Love has put meat on my bones and I love my new shape.  We were married on a beautiful warm October day a little over a year ago. My father, playing dual role of dad and minister, walked me down a grassy path lined by my friends and family to a beautifully decorated gazebo.  He walked me to the waiting arms of my love named Ross and then proceeded to marry us.

Walking proudly with love in my life and a new found strength, after 20 years of healing from multiple surgeries and being told that I was too frail to work, I went back to school to learn a specialty in nursing.   In 2008 I became certified in wound, ostomy and continence nursing (WOCN).   I have been a WOCN in a small hospital now for three years and have received great joy in being able to offer my patients hope in the face of devastating illnesses.  Many of my patients are new to their ostomy journey.  Most are fearful and devastated and can’t imagine living a life with an ostomy – whether it be temporary or permanent.  Some have a new ostomy due to cancer and they often find the ostomy more difficult to deal with than the cancer diagnosis.  Whatever the reason for the ostomy, people often feel a sense of shame at the way their body has been altered in order to heal.  I am honored to be able to tell these patients my story and to offer the hope that they too will adapt and learn to not just live but thrive while living with an ostomy.  I have learned that with every patient I see, I also experience personal healing. I believe that if you truly give to another human being, you will in turn receive the gift of self compassion.

People who have survived devastating illnesses often experience a unique kind of joy in life. I, too, feel that sense of joy.  It’s a kind of joy that comes from an unexpected place. It’s a joy that says I would not change anything about what I have experienced or who I have become. It’s a joy that comes from finding beauty in a wounded place. I adopted a name for this kind of joy from a friend who calls it Radical Joy.  When joy emerges and springs forth from a deep wound, a radical transformation has occurred. Radical Joy moments happen all the time. Some are instantaneous and some take years of struggle to break through.

Joanna Burgess with her husband Ross Stocks along with their entire family

I walk up to the podium in Chattanooga Tennessee to receive my award for being an inspiration to people living with ostomies and to tell my story. I am humbled to be given this gift for simply being a survivor and for learning to come back fully into life to give hope to others. So many things flash through my mind as my husband escorts me up the stairs to the platform.  I walk proudly, cane in hand, for I have made a great comeback. I have found passion, compassion, healing and love.  I was asked to tell my story because it is one of the most important things we can do in life. By telling our own story, we may touch a place of remembrance in someone else; a place that yearns to fully embrace their own life and knowing of self.  As I begin to tell the story of my journey, I realize just how far I have come and how much I have healed. I start to tremble, feeling overwhelmed by the gathering emotions welling up inside of me. A flash of light from a camera takes me back and I remember that I have not walked this journey alone.  I look at my husband’s big blue eyes, breathe, pause, and continue, just like I have learned to live my life.  In the audience are other people who have journeyed along a similar path to my own.  They, too, have survived life altering illnesses and are living with ostomies. They, too, have journeyed back to fully embrace life.  I finally tell that six year old girl with the beautiful red shoes that she has found what she has been looking for – she has found people just like her.  Clickity-clack clickity-clack tap tap tap. She beams her incredibly big beautiful smile and dances on her way.

© Copyright 2012 Joanna J. Burgess

Addition links of Joanna Burgess to view:

2011 Great Comebacks® South Region Award Recipient and you can find out more about Great Comebacks® and Joanna Burgess at  http://www.greatcomebacks.com/us/stories/Joanna-Burgess.shtml

Sarcoma Alliance Cares for Children and Young Adults – News Release about Joanna Burgess: http://www.prweb.com/releases/2011/9/prweb8834724.htm

If you would like to contact Joanna Burgess please do so by sending her an e-mail to contact@courage-to-shine.org and we will forward it to Joanna.

Categories: Courage to Shine News, Inspirational Stories | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 6 Comments

2012 List of Camp and Campout Programs for Exstrophy Kids, Teens and Families:


 2012 List of Camp and Campout Programs for Exstrophy Kids, Teens and Families

By Thomas Exler

For about the last 6 or 7 years or so each spring, I have been putting together a list of camps and programs for families living with bladder exstrophy.  It originally started out as an e-mail, but this year it will be also on the Association for the Bladder Exstrophy Facebook Notes and on Courage to Shine, in addition to the exstrophy e-mail groups.

This year, I have also added a listing for programs in Spain, and here on Courage to Shine have included some pictures and videos to represent each program.

If  you have a child who could benefit from one of these programs I would highly recommend you look into one or more of them.

Thomas Exler’s: 2012 List of Camp and Campout Programs for Exstrophy Kids, Teens and Families: USA, CANADA, UNITED KINGDOM, GERMANY, SPAIN and AUSTRALIA

USA:

2012 YOUTH RALLY: 

Sponsored by: YOUTH RALLY COMMITEE INC.

Website: http://www.rally4youth.org/

Program held on a university campus

Age: 11-17 year olds

Youth Rally provides a non-threatening environment where adolescents with bladder or bowel dysfunction receive education and psychosocial support that encourages independent living.

2012 Site: University of Colorado, Boulder, Colorado

Dates: Monday July 9 – Saturday July 14, 2012

Camper Applications: http://www.rally4youth.org/camperapp.php  All application forms due by June 1 2012

Contacts: Linda Aukett laukett@rally4youth.org

Photos from the 2011 Youth Rally: http://www.rally4youth.org/photos.php

Video from the 2008 Youth Rally:  http://www.youtube.com/watch?v=2XYgBe-ZI9w

____________________________________________________________________________

4rd ANNUAL ABC GREAT LAKES CAMPOUT

2011 ABC Great Lakes Chapter Campout

Sponsored by: ASSOCIATION FOR THE BLADDER EXSTROPHY COMMUNITY – GREAT LAKES CHAPTER

Program is a family campout for families dealing with bladder exstrophy, clocal exstrophy, epispadias or hypospadias

2012 Site: Eby’s Pines Campground and RV Park, Bristol, Indiana

Dates: Friday July 20 – Sunday July 22, 2012

Contact: Alice Ambrose at 616-895-6375or at bradnalice@charter.net and she will explain how to make the reservation

Video from the 2011 ABC Great Lakes Campout:  http://youtu.be/fsbev0UZLXM

_______________________________________________________________________

2012 CALIFORNIA B.E.S.T CAMPOUT

Group Photo of all the families who attended the 2011 California B.E.S.T. Campout

Sponsored by: CALIFORNIA B.E.S.T (Bladder Exstrophy Support Team)

2012 site: Campground by the Lake, South Lake Tahoe, California

Dates: Friday August 3 – Sunday August 5, 2012

More info on the campout: http://www.californiabest.org/BESTcampout.htm

If you are interested in attending the 2012 Annual B.E.S.T. campout, or if you would like more information, send an e-mail today to Rebecca Hunter at rebecca_kylee@hotmail.com  or racrazymomoffour@gmail.com

Video from the 2011 California B.E.S.T. Campout: http://youtu.be/zYVLNWFhAYA

Note: I (Tom Exler) have attended the Youth Rally, California BEST Campout and ABC Great Lakes Campout; I highly recommend all three events, but especially for any child 11-17 with bladder or cloacal exstrophy to consider sending them to attend the Youth Rally in Boulder, Colorado.

________________________________________________________________________

CANADA:

UOAC OSTOMY YOUTH CAMP

Sponsored by: UNITED OSTOMY ASSOCIATION OF CANADA (UOAC)

Website: http://www.ostomycanada.ca/camp/camp1

Pictures: http://www.ostomycanada.ca/camp/camp_photos

Program held at a traditional summer camp

Ages: 9-18 year olds

Children between the ages 9 – 18 who have had or who will have bowel or bladder diversionary surgery or who have related special needs ( i.e. self catheterization, bowel and bladder incontinence), due to birth defects, trauma or disease (e.g.. Crohn’s disease, Ulcerative Colitis, Cancer, Spina Bifida.)

2011 Site: Camp Horizon, Bragg Creek Alberta (southwest of Calgary)

Dates: July 2 – 7 , 2012

More info on the Ostomy Youth Camp: http://www.ostomycanada.ca/camp/camp1

CONTACT: UOAC office or Camp Coordinator, Pat Cimmeck at pvc@shaw.ca  or phone 403-680-9551

Rob Hill on Ostomy Camp video: http://youtu.be/X1CWAn5kW_w 

Note: I (Tom Exler) have known many of the campers, camp counselors who have attended over the year including the long time Camp Coordinator Pat Cimmeck, and for the last few years our very good friend to the exstrophy community Barbara Neilson has also been attending, and Barbara has also reminded me , that you do not have to be a Canadian to attend the Canada Ostomy Youth Camp, that they regularly have had campers from the USA, and this year expect some campers from Trinidad to attend.  Therefore it you have a child between 9-18 please consider having them attend the UOAC (Canada) Ostomy Camp at Camp Horizon; it will be the highlight of their summer.

________________________________________________________________________________

UNITED KINGDOM:

BREAKAWAY 

Breakaway Kids from May 2011

Session 1: BREAKAWAY 4 May – 7 May 2012 (Full)

Session 2: BREAKAWAY 24 August – 27 August 2012 (Few spaces left)

Sponsored by: BREAKAWAY VISITS

Website: http://www.breakaway-visits.co.uk/

Program for families

Breakaway are the UK’s only residential weekend activity breaks designed for young people aged 4-18 with bowel and /or bladder diversions/dysfunctions, and their families. Breakaway offers the opportunity to meet others in similar situations, to talk, share experiences and to take part in confidence building action adventure activities.

2012 Site: Youth Hostel Association (YHA) National Forest, Swadlincote, Derbyshire, England

Application for 2012: http://www.events.breakaway-visits.co.uk/node/24

Breakaway Contact: http://www.breakaway-visits.co.uk/node/210 or Julie Bastin at break.away@tiscali.co.uk

Video from 2011: http://www.facebook.com/v/10150185432171266

Note: In 2011 I (Tom Exler) led a team of international patient role models, who have had all types of bowel and/or bladder diversions/dysfunctions to the first 2011 Breakaway session that is going to be held 29 April – 2 May 2011. I highly recommend it, if you live in the UK and have a child born with bladder or cloacal exstrophy, to consider attending a future Breakaway event.

__________________________________________________________________________________

SPAIN:

Asexve – Asociación de Extrofia Vesical, cloacal y epispadias

ASEXVE has three events this year

Website: http://asexve.es/

Annual Meeting for Families dealing with Bladder & Cloacal Exstrophy

Dates: Friday June 22 – Sunday June 24 2012

Location: Palencia, Spain

————————————————————-

Exstrophy Camp Children & Teens from 6-17 year old

Dates: Sunday August 5 – Saturday August 11 2012

Location: Navarra, Spain

 —————————————————————-

Meeting for Medical Professions on Bladder & Cloacal Exstrophy

Dates: November of 2012 (Dates have not been finalized)

Location: Madrid, Spain

For more information on any of the events in Spain please contact ASEXVE and Charo López at asexve@asexve.es

______________________________________________________________________________________

GERMANY:

SHG BLASENEKSTROPHIE ANNUAL MEETING

Some of the Young Adults at the 2008 SHG Blasenekstrophie (Germany) Meeting

Sponsored by: SHG Blasenekstrophie

Website: http://www.blasenekstrophie.de/

Annual Meeting site: http://www.blasenekstrophie.de/index.phpnavi_main=Aktuelles&navi_sub1=Treffen&navi_sub2=Jahrestagung2012

Annual Meeting is held at a Hostel in Oberbernhard and is an event for the entire family.

2011 Site: Oberbernhards, Hilders,Germany

Dates: Friday 21 September – Sunday 23 September 2012

Contacts: Julia Petsch Allies Tel: +49-08206-963962 e-mail: petschallies@ekstrophie.de  Lilia Brunner Tel: +49-0351-64542745 e-mail: brunner@ekstrophie.de

Note: In 2008 I attended the SHG Blasenekstrophie Annual Meeting in Oberbernhards, I recommend anyone in Europe that is looking for an event to attend, to contact Julia Petsch Allies, she will make sure you feel very welcome, even if your German is very rusty like mine.

________________________________________________________________________________

AUSTRALIA:

Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias, Australian Community (BEECHAC)

Contact: BEECHAC for future events: www.beechac.org

or BEECHAC President Katy Hargreaves katy.hargreaves@beechac.org

Video link: http://www.facebook.com/v/402361601265

Categories: Courage to Shine News | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Family Campouts for Bladder Exstrophy


Family Campouts for Bladder Exstrophy

By Thomas Exler

Group photo of the families who attended the 2011 California BEST Campout - Photo courtesy of Doug Kreitz

Each year there are two family campouts for Bladder Exstrophy held in the USA, one in South Lake Tahoe, California and the other one in Northern Indiana

In August of 2002, I was invited as a guest speaker to attend the 2002 California Bladder Exstrophy Support Team (B.E.S.T.) Campout.  That year and every year since it has been held at the Campground by the Lake, in South Lake Tahoe, California and was run then by Doug Kreitz and Rebecca Hunter of California, and still is today.

This was my first family campout for bladder exstrophy, and I was so very impressed with the families in attendance, and it was such a positive experience as well, before even including the natural beauty of Lake Tahoe, that I have flown out from Pittsburgh five additional times to the California Bladder Exstrophy Support Team (B.E.S.T.) Campouts since that first one in 2002, however this time just to have a great weekend in the sun with some amazing families.

Then in 2009, Alice Ambrose organized the ABC Great Lakes Chapter Campout, and 2012 this will be their 4thyear in

2011 ABC Great Lakes Chapter Campout

existence, and they have come a long way in 4 years.  I was honored to attend the 2010 and 2011 Campouts at Eby’s Pines Campground and RV Park, Bristol, Indiana.

Alice Ambrose used to be a member of the Northwest Bladder Exstrophy Support Group out of Seattle and each year they would hold a campout.   So when she moved to Michigan along with her husband, she wanted to rekindle the campout idea to help the families of the Great Lakes Region or Mid-west Region.

Below are two videos from both 2011 Campouts in Indiana and California

Family Campouts for Bladder Exstrophy – Part 1 – 2011 ABC Great Lakes Chapter Campout

Family Campouts for Bladder Exstrophy – Part 1 – 2011 ABC Great Lakes Chapter Campout

Filmed on location at the 2011 ABC Great Lakes Chapter Annual Family Campout
Eby’s Pines RV Park & Campground, Bristol, Indiana, USA
Friday July 22 – Sunday July 24, 2011

2012 ABC Great Lakes Chapter Campout
Friday July 20 – Sunday July 22 2012
Eby’s Pines RV Park & Campground
Bristal, Indiana, USA

For more information on the 2012 ABC Great Lakes Family Campout
Please e-mail Alice Ambrose at bradnalice@charter.net  

Note check at the end of this blog for a letter from Alice Ambrose

Family Campouts for Bladder Exstrophy – Part 2 – 2011 California Bladder Exstrophy Support Team (B.E.S.T.) Campout

Family Campouts for Bladder Exstrophy – Part 2 – 2011 California Bladder Exstrophy Support Team (B.E.S.T.) Campout

Filmed on location at the 2011 California Bladder Exstrophy Support Team (B.E.S.T.) Campout
South Lake Tahoe, California, USA
Friday August 5 – Sunday August 7, 2011 

California Bladder Exstrophy Support Team (B.E.S.T.) Campout
Friday August 3 – Sunday August 5, 2012
Campground By The Lake
South Lake Tahoe, California, USA

For more information on the California Bladder Exstrophy Support Team (B.E.S.T.) Campout
Please e-mail Rebecca Hunter at racrazymomoffour@gmail.com or got to http://www.californiabest.org/BESTcampout.html 

We hope you will plan to join us at either the ABC Great Lakes Chapter Campout in Northern Indiana or at the California B.E.S.T Campout in South Lake Tahoe, California this summer

——————————————————————————————————————————————–

The 4th Annual Summer 2012 ABC Great Lakes Exstrophy Campout!

March 11, 2012

Dear Friends of the Association for the Bladder Exstrophy Community Great Lakes Chapter,

You are invited to join us for the 4th annual Summer 2012 Great Lakes Exstrophy Campout, which is scheduled over the weekend of Friday, July 20 thru Sunday, July 22, 2012 at Eby’s Pines RV Park & Campground in Bristol, Indiana. Bristol is located in northern Indiana just off the Indiana Toll Road, within 150 miles of Chicago, Detroit, and Indianapolis.

The program is a campout for 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 that you are not alone! For a video and pictures from last year’s campout, check out this video on YouTube!: http://youtu.be/fsbev0UZLXM. (You can also open YouTube and search for the video entitled, “Family Campouts for Bladder Exstrophy – Part 1 2011 ABC Great Lakes Chapter Campout.”)

Campsites are still available. Please call Eby’s PinesCampground directly at 574-848-4583 to make your reservation and let them know you are with the “Ambrose group”. Please also call or e-mail me to let me know that you are coming, so that I can have a head count for activities and dinner Saturday night.

If you are interested in coming but don’t want to camp, there are a number of nice hotels about 10 minutes down the road in the town of Shipshewana, IN. The website that can link you to these hotels is at http://www.Shipshewana.com.

We hope to see you there, whether you can stay for the whole weekend or even just part of it! In the meantime, details on the campground amenities can be found at www.ebyspines.com, and more information about the campout can be found in the text below. In addition, please feel free to contact me with any questions or comments about this and any future activities.

Kindest Regards,

Alice Bass Ambrose, R.N., B.S.N.

bradnalice@charter.net

home (616) 895-6375

cell (616) 406-7857

——————————————————————————-

The ABC is an international support network of individuals with bladder exstrophy (including classic exstrophy, cloacal exstrophy, and epispadias), local parent-exstrophy support groups, and health care providers working with patients and families living with bladder exstrophy. http://www.bladderexstrophy.com

The Great Lakes Chapter of The ABC is a regional network serving the Great Lakes states (MI, MN, WI, IL, IN, NY, PA, and OH) as well as Ontario. Please contact Alice Ambrose at bradnalice@charter.net or (616) 895-6375 if you have any questions or suggestions about future ABC Great Lakes Chapter events.

——————————————————————————-

Details about the ABC Great Lakes Chapter 4th Annual Summer Campout:

Friday, July 20 to Sunday, July 22, 2012

Location and Facilities:

Eby’s Pines RV Park & Campground in Bristol, Indiana is located in the scenic forests of northern Indiana’s Amish Country. It is just minutes from the Indiana Toll Road.

Campsites include tent sites, full hook-up sites, pull-thru sites, and cabins (see campground website for details about sites and amenities). The campground offers two heated pools, fishing and playground equipment.

Check the campground website, http://www.ebyspines.com/campground/campsites.htm, for 2012 rates.

Eby’s Pines is close to shopping in Shipshewana, museums in Elkhart and Das Dutchman Essenhaus in Middlebury, to name just a few of the nearby area attractions.

Please see their home webpage, http://www.ebyspines.com, to view complete activities offered by the campsite and surrounding area.

Activities:

Join us for a “meet and greet” with other families from our group beginning at 9:30 am on Sat., July 21. We will tentatively meet in the Shady Lane area of the campground, where we have reserved a block of sites under the “Ambrose group.” We then plan to meet again for dinner Saturday evening around 5:30 pm.

Reservations:

Please call the campground directly at 574-848-4583 to make a reservation and let them know you are with the “Ambrose group”. (Eby’s Pines has an on-line reservation system, however that system cannot manage group reservations like ours. Instead, please call the campground directly.)

Location of and directions to Eby’s Pines RV Park & Campground: Eby’s Pines RV Park & Campground is located in the scenic forests of Northern Indiana Amish country. The campground is easy to find-just minutes from the Indiana Toll Road I-80/90) on State Road 120.

Address: Eby’s Pines Campground 14583 State Road 120 Bristol, IN 46507

Phone: (574) 848-4583

Web: www.ebyspines.com 

Approximate driving distances from: Detroit: 120 miles, Indianapolis: 150 miles, Grand Rapids: 90 miles, Chicago: 135 miles, Fort Wayne: 55 miles, Toledo: 105 miles

Directions from Chicago and points west: Following the I-80/I-90 East toll road, take Exit 101 (Bristol Exit). Go South on SR 15 for 2 miles to SR 120. Turn East onto SR 120 and go 3 miles. Eby’s Pines is on the South side of the road.

Directions from Ohio and points east: Following the I-80/I-90 West toll road, take Exit 107 Middlebury Exit. Go South on SR 13 for 1 mile to SR 120. Turn West onto SR 120 and go 3 miles. Eby’s Pines is on the South side of the road.

Categories: Courage to Shine News | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

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

I Will Work And Find The Courage To Shine


http://uromed.wordpress.com/2012/01/30/i-will-work-and-find-the-courage-to-shine/

From UroMed Hometown Heroes – Originally posted on January 30, 2012

Tom Exler says that Courage to Shine will allow those with disabilites to never hold back!

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.

Read more at: http://uromed.wordpress.com/2012/01/30/i-will-work-and-find-the-courage-to-shine/

UroMed Catheter Health Blog

Editor’s Note: Thomas Exler, the president of the Association for the Bladder Exstrophy Community (ABC) , also is the chairman and founder of Courage to Shine, an organization created to provide information for others, like Exler, who have found ways to overcome their problems and become successful people. As Exler explains, “I was lucky to find role models who showed me that nothing’s impossible for people like me. But not everyone has the opportunity to meet others who have led highly visible, successful and rewarding lives in spite of their disabilities. That’s why we created Courage to Shine – to introduce individuals to other people with similar challenges and to provide a forum and a webpage where individuals can find role models who have demonstrated that there are no limits for people with physical challenges.” Part 5 of a 5-part series.

For the first year or two of Courage to Shine’s

View original post 544 more words

Categories: Courage to Shine News, Inspirational Stories | Tags: , , , , , , , , , , , , , , , | Leave a comment

No Mountain Is Too High To Climb When You Have Courage


http://uromed.wordpress.com/2012/01/28/no-mountain-is-too-high-to-climb-when-you-have-courage/

From UroMed Hometown Heroes – Originally posted on January 28, 2012

Tom Exler believes that people with disabilities can be just as great and successful as anyone else.

Courage to Shine was created to help people who have medical challenges see that the only walls between where we are, and where we want to go, are the walls we put up.

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.

To read more: http://uromed.wordpress.com/2012/01/28/no-mountain-is-too-high-to-climb-when-you-have-courage/

UroMed Catheter Health Blog

Editor’s Note: Thomas Exler, the president of the Association for the Bladder Exstrophy Community (ABC) , also is the chairman and founder of Courage to Shine, an organization created to provide information for others, like Exler, who have found ways to overcome their problems and become successful people. As Exler explains, “I was lucky to find role models who showed me that nothing’s impossible for people like me. But not everyone has the opportunity to meet others who have led highly visible, successful and rewarding lives in spite of their disabilities. That’s why we created Courage to Shine – to introduce individuals to other people with similar challenges and to provide a forum and a webpage where individuals can find role models who have demonstrated that there are no limits for people with physical challenges.” Part 4 of a 5-part series.

Courage to Shine was created to help people who have…

View original post 992 more words

Categories: Courage to Shine News, Inspirational Stories | Tags: , , , , , , , , , , , , , , , , , | Leave a comment

A “You Can” Attitude Helps Children with Disabilities Find the Courage to Shine


http://uromed.wordpress.com/2012/01/27/a-you-can-attitude-helps-children-with-disabilities-find-the-courage-to-shine/

From UroMed Hometown Heroes – Originally posted on January 27, 2012

Children with disabilities can be just as courageous as an able bodied person–they just need positive support.

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.

Read more at: http://uromed.wordpress.com/2012/01/27/a-you-can-attitude-helps-children-with-disabilities-find-the-courage-to-shine/

UroMed Catheter Health Blog

Editor’s Note: Thomas Exler, the president of the Association for the Bladder Exstrophy Community (ABC) , also is the chairman and founder of Courage to Shine, an organization created to provide information for others, like Exler, who have found ways to overcome their problems and become successful people. As Exler explains, “I was lucky to find role models who showed me that nothing’s impossible for people like me. But not everyone has the opportunity to meet others who have led highly visible, successful and rewarding lives in spite of their disabilities. That’s why we created Courage to Shine – to introduce individuals to other people with similar challenges and to provide a forum and a webpage where individuals can find role models who have demonstrated that there are no limits for people with physical challenges.” Part 3 of a 5-part series.

When parents learn that their children have a medical issue…

View original post 916 more words

Categories: Courage to Shine News, Inspirational Stories | Tags: , , , , , , , , , , , , , , , | Leave a comment

Life’s Great Possibilities Await For People With Disabilities Who Find The Courage To Shine


http://uromed.wordpress.com/2012/01/26/the-great-possibilities-in-life-for-people-with-disabilities-who-find-the-courage-to-shine/

From UroMed Hometown Heroes – Originally posted on January 26, 2012

ExlerCourage 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.

Tom Exler shares his story and motivates others with similar disabilities.

Read more at: http://uromed.wordpress.com/2012/01/26/the-great-possibilities-in-life-for-people-with-disabilities-who-find-the-courage-to-shine/

UroMed Catheter Health Blog

Editor’s Note: Thomas Exler, the president of the Association for the Bladder Exstrophy Community (ABC) , also is the chairman and founder of Courage to Shine, an organization created to provide information for others, like Exler, who have found ways to overcome their problems and become successful people. As Exler explains, “I was lucky to find role models who showed me that nothing’s impossible for people like me. But not everyone has the opportunity to meet others who have led highly visible, successful and rewarding lives in spite of their disabilities. That’s why we created Courage to Shine – to introduce individuals to other people with similar challenges and to provide a forum and a webpage where individuals can find role models who have demonstrated that there are no limits for people with physical challenges.” Part 2 of a 5-part series.

Exler: Courage to Shine, a new project we…

View original post 888 more words

Categories: Courage to Shine News, Inspirational Stories | Tags: , , , , , , , , , , , , , , , , , | Leave a comment

Courage Is The Key To Overcome Fear With Thomas Exler


http://uromed.wordpress.com/2012/01/25/courage-is-the-key-to-overcome-fear-with-thomas-exler/

Thomas Exler, Founder of Courage To Shine

From UroMed Hometown Heroes – Originally posted on 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.

Read more at http://uromed.wordpress.com/2012/01/25/courage-is-the-key-to-overcome-fear-with-thomas-exler/

UroMed Catheter Health Blog

Editor’s Note: Thomas Exler, the president of the Association for the Bladder Exstrophy Community (ABC) , also is the chairman and founder of Courage to Shine, an organization created to provide information for others, like Exler, who have found ways to overcome their problems and become successful people. As Exler explains, “I was lucky to find role modelswho showed me that nothing’s impossible for people like me. But not everyone has the opportunity to meet others who have led highly visible, successful and rewarding lives in spite of their disabilities. That’s why we created Courage to Shine – to introduce individuals to other people with similar challenges and to provide a forum and a webpage where individuals can find role models who have demonstrated that there are no limits for people with physical challenges.” Part 1 of a 5-part series.

I’m often asked, “Why is a support group

View original post 988 more words

Categories: Courage to Shine News, Inspirational Stories | Tags: , , , , , , , , , , , , , , , | Leave a comment

Blog at WordPress.com.

%d bloggers like this: