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




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



2011 ABC Great Lakes Chapter Campout


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



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.





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.




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)


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.



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




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.



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

Post navigation

One thought on “2012 List of Camp and Campout Programs for Exstrophy Kids, Teens and Families:

  1. Reblogged this on Courage to Shine™ and commented:

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

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: