My name is Rachel, and I am a 31-year-old woman from the UK who has been ill now for 10 years. I am a proud double ostomate with a permanent urostomy and ileostomy! It has been a journey, to say the least not just physically but emotionally, mentally and spiritually. I have gone through stages of hopelessness, feeling lost, alone and in self-pity. To now finding gratitude for my illness, helping others and building a career based on my experiences.
To see more go to: Rachel Jury – Rocking2Stomas.co.uk
To see more go to: Emily Kohlman – Turning Scars Into Beauty Marks
Friday, July 27 to Sunday, July 29, 2018
Friday August 3 to Sunday August 5 , 2018
Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge into opportunity. Tommy received the honor, in part, because he is by all available accounts the first bladder exstrophy patient to hike to Mt. Everest Base Camp.
The 12-day journey to an elevation of 17,600 feet, is no small feat and Tommy had to overcome unique challenges. The burden of carrying medical supplies was lightened thanks to sponsorship from CompactCath. Tommy got hypothermia during the trip and he couldn’t use the medication everyone else did for more oxygen. But he and his family never gave up.
Other Birth Defects:
Courage to Shine™ Tours
- The A-BE-C Great Lakes Chapter 8th Annual Summer Campout – June 24-26, 2016
- 2016 International Exstrophy Conference In Oklahoma City, OK, USA – July 8–10, 2016
- The 2016 B.E.S.T. (Bladder Exstrophy Support Team) Campout -August 5 -7, 2016
- The B.E.S.T. Campout – July 31 – August 2 2015
- Great Lakes 7th Annual Summer Campout
- World Rare Disease Day – February 28, 2013
- 12th Annual California Bladder Exstrophy Support Team Campout – August 3 – 5, 2012
- 4th Annual ABC Great Lakes Chapter Campout – July 20-22, 2012
- Jamie Holmes – Jamie’s Dream Team Presents – ‘Beyond Belief’ – Posting by UroMed on the event at UroMed Hometown Heroes Blog Site
- Misty Blue Foster & Jamie Holmes Featured in eBook Honoring the Best of UroMed Hometown Heroes
- Family Campouts for Bladder Exstrophy
- UroMed Sponsors Camp Krazy Legs’ Family Day for Children With Spina Bifida
- 2012 List of Camp and Campout Programs for Exstrophy Kids, Teens and Families: