The recent BIO Patient & Health Advocacy Summit brought together industry and advocacy groups to share insights and perspectives on how to accelerate the development of cures and treatments and improve the lives of patients overall.
Paul Hastings, Chairman and CEO of OncoMed Pharmaceuticals Inc. highlighted one such effort to help improve the lives of young people dealing with a range of bladder and bowel issues. Youth Rally Committee, Inc. provides young people with opportunities to connect with children and teens who live with similar medical conditions to form lasting friendships in an atmosphere that promotes self-confidence and independence.
Campers, and their counselor mentors alike, all live with a variety of conditions affecting the bowel and bladder, including ulcerative colitis, short gut or bowel syndrome, bladder exstrophy, spina bifida, and Crohn’s Disease, among others. In addition to volunteer counselors, the Youth Rally staff includes a number or volunteer nurses who have specialty training in pediatrics, acute care, and/or specific conditions. Many of the Youth Rally team are former campers themselves, including some of the nurses! Just like Youth Rally camper and volunteer diagnoses vary, so do their management techniques. Some campers and volunteers are able to manage their conditions without medical/surgical intervention, including continuous tube feeding, ostomy and other supportive surgery, dialysis, intermittent catheterization and enemas.
For the past 30 years, more than 100 children and teens from all over the U.S., Europe, Latin America and Canada have gathered for the Youth Rally each year. The kids have the opportunity to learn more about their medical condition(s), connect with peers and develop friendships that last beyond the camp, and participate in field trips and fun activities. In addition to recreational programming, the Youth Rally facilitates peer discussion groups and provides educational sessions addressing topics that are common among adolescents and issues that are unique to kids living with medical and physical challenges, including motivational sessions, living independently, body image and personal hygiene.
Parents and kids alike praise the program for empowering young people and helping them to gain courage, confidence and live independently. One recent camper called the camp a ‘life changing experience’ and another stated that the experience helped them to work through negative feelings about their medical condition. The next camp is scheduled for July 13-18 in Boulder, Colorado. For more information, please visit www.rally4youth.com.
The Youth Rally Committee, Inc. is a non-profit 501c(3) incorporated in 2005. All tax-deductible donations go directly to Youth Rally and no child is ever turned away for financial reasons.