The Disease:

GER is the inappropriate backwashing of stomach contents into the esophagus. In pediatric patients, GER is sometimes called "colic" and may range in severity from mild to life-threatening. Symptoms and complications may include: frequent night waking; inconsolable crying; copious spitting up or vomiting; choking; failure to thrive; aversion to eating; esophageal strictures; asthma; aspiration pneumonia; apnea; and Sudden Infant Death Syndrome. Once considered a rare, self-limiting condition of early infancy, pediatric GER is now recognized as a common and often chronic condition affecting children of all ages. Epidemiology estimates in 2005 indicate that as many as seven million children in the US may suffer from GERD – most without a proper diagnosis.


Parents Need Support and Information:

The 24-hour intensive-care-parenting required by these children is physically exhausting and the crying is emotionally draining for many parents. Instructions for positioning, handling, feeding and giving medication can be difficult to follow properly. Specific home-care techniques and an opportunity to learn from other parents can greatly affect the child's health. We focus on producing literature for parents and para-professionals that is easy to read and practical but contains a wealth of useful details.


The Organization:

The Pediatric / Adolescent Gastroesophageal Reflux Association, Inc. (PAGER) is a 501(c)(3), non-profit organization formed in 1992 to provide information and support to parents of children diagnosed with gastroesophageal reflux (GER). Our mission is to: (1) gather and disseminate information on pediatric gastroesophageal reflux (GER) and related disorders; (2) provide educational and emotional support to patients with GER, their families, and professionals; (3) promote awareness of GER within both the medical community and the general public; and (4) promote research into the causes, treatments and eventual cure for pediatric GER


Programs:

PAGER offers information via non-technical brochures, descriptions of tests and procedures, practical home-care techniques, medical journal articles and video tapes. Our newsletter, Reflux Digest, has been commended for its unique blend of practical information, research updates, professional input and irreverent humor. Parent-to-parent support and advice from trained Expert Parents is available via mail or e-mail, on the phone and through informal networking. Approximately 2.3 million people per month access the information on our extensive web site which received an award for quality information on the Internet. PAGER can help physicians and other medical professionals by answering practical, non-medical questions so that physicians can devote their time to medical care issues. PAGER staff provide in-service trainings for professionals and paraprofessionals. PAGER collaborates with child abuse prevention programs. PAGER staff and volunteers teach Pediatric GERD 101 classes at local hospitals. PAGER has a booth at medical conferences to make professionals aware of PAGER. PAGER conducts many types of public awareness activities and has established November 1 as Tummy Ache and Pediatric GERD Awareness Day. We have generated extensive media coverage of pediatric GERD in newspapers and magazines and have testified before Congress.


Current Research:

PAGER initiated a collaboration with Allegheny Singer Research Institute, Center for Genomic Sciences on a study to explore the genetics of pediatric GER. Initial results were published in JAMA 7/19/2000. PAGER is actively recruiting participants for this study. We have a database of families in the US and abroad and are interested in collaborating with researchers. We have already outlined some studies and welcome inquiries about other areas of research. Our web site offers a unique opportunity for recruiting patients with any criteria.


Collaborations:

PAGER Association has collaborated with TAP Pharmaceutical Products Inc. on research and awareness projects and with Astra Zeneca LLP USA on a research project. We accept advertising from several companies that manufacture products related to GERD. PAGER staff have consulted with several companies seeking to gain from the parent perspective. We have collaborated on publications with several other non-profit organizations and belong to several health coalitions.


The PAGER Team:

PAGER's governing Board of Directors is comprised of parents of children with GER, adults with GER, and individuals with scientific or professional expertise. The composition of the board assures that we can meet our principal objective of providing both accurate information and effective emotional support to our members. PAGER has a very small staff of committed parents as well as a large team of experienced parent volunteers who receive extensive training.


Benefits of Membership:

PAGER members include families of children (newborn to teens) with GER and related disorders, professionals who care for the children, researchers, and others interested in helping families. Dues are now free – just register on www.reflux.org. Members receive free e-newsletters with research updates, practical home care ideas, updates on treatments with a dash of humor. Members may post on our very active discussion boards.


Publications

A full list of publications is available. Most have recently been posted www.reflux.org. PAGER staff have also written articles that have been published in medical journals and consumer magazines.