Daily Point of Light # 2632 Mar 8, 2004

The United Ostomy Association is a volunteer-based health organization dedicated to providing education, information, support and advocacy for people who have had or will have intestinal or urinary diversions. Headquartered in Irvine, California, UOA serves more than 25,000 members in the United States of all ages.

People with ostomies come in all sizes, ages, and physical descriptions. More than 250,000 people have been helped by UOA in the past 40 years. Often the association meets them as young children, watches them grow through their teens to young adults and ultimately sees them as fully independent and productive adults.

For 25 years, UOA has been sponsoring a summer Youth Rally – a camp for children aged 11-17 who have an ostomy or related procedure, usually caused by birth defects such as Spina Bifida, Hirschprung’s Disease, Cloacal Exstrophy, Crohn’s and Colitis, or even bladder or colon cancer. Ever since the first UOA Youth Rally in 1978, they have been dedicated to healing young lives affected by ostomies, continent diversions and bowel and bladder medical conditions. In fact, UOA is the only agency in the United States that conducts this event for children with these conditions.

In these 25 years, UOA has reached thousands of special-needs children. The Rally is held on a university campus and includes informative health education classes on topics ranging from dating and hygiene, multiple surgeries, what clothing will camouflage the ostomy appliance, and dancing, sightseeing, shopping, and all kinds of sports. Days are filled with active times of laughter and learning and quiet times of conversation with peers and staff who have similar situations – all provided in a sage, healthy, fun-filled camp environment. Many of these children have never met another person their age with the same medical challenges, and for many it is the first time they are away from home, The Rally teaches the independent living skills they will use for the rest of their lives to be fully functional adults. And the children make lifelong friends with home they communicate regularly to discuss their progress to wellness.

The Youth Rally requires dedicated staff and medical professionals that are passionate about helping special-needs children. It takes more than 50 such counselors and specialized nurses to support the Rally each summer. Most of them are ostomates themselves and all of whom have used their personal vacation time and own finances to attend and provide the special attention our campers receive. The expense to promote and run the Rally is entirely born of donations made my UOA chapters and members, the special volunteer counselors and nurses, other medical professionals, and corporations. UOA’s Central Office provides administrative support, while the Rally Program Chair, Medical Chair and Psychological Support Chair are all volunteers.

Most campers attend the Rally for 4-6 years consecutively. Once a camper turns 18, they “graduate” from the Rally. Many of them subsequently return as volunteer counselors because they learned the skills they need to be able to now help other children. This truly demonstrates the benefit of the Rally and the ongoing involvement of the campers. At last year’s camp, close to 50% of the volunteer counselors were previous campers.