American SIDS – Autonomic Dysfunction Center is an all-volunteer organization. Our volunteers include those whose lives have been impacted by Sudden Infant Death Syndrome, SIDS-at-risk, and by autonomic dysfunction, including healthcare givers, as well as a broad cross-section of the general public. We have no administrative salaries or other paid employees. All donations and other funding goes directly to the services we provide. Pro bono administration and other services are provided to the AMSAD Center by CMSI, a management consulting group.
Our motto is “There’s a cure at the end of the rainbow.” Researchers are following promising paths to those cures we need. However, as we work to find a cure, we must all do everything in our power to reduce the number of deaths and disabilities related to these conditions. One of the things we can do is to reduce the disconnect between research findings and their implementation into best practices of healthcare providers and the general public. We can use all of the identified risk factors to prevent deaths.
Autonomic dysfunction is implicated in a wide range of conditions and disease processes, and has been proven to be an accurate indicator of high risk for sudden death, whether by SIDS or other incident. Decades ago, research proved that simple screening techniques like the orthostatic blood pressure test and variable heart rate measurements were effective as screening techniques to diagnose autonomic dysfunction or insufficiency, thus indicating high risk. This screening diagnosis can foster identification of an underlying condition of disease process, or of autonomic dysfunction as its own condition, and thus allow proper management of a patient’s healthcare and environment, thus reducing deaths and disabilities. [See research findings.] Yet most physicians today, including pediatricians, do not usually and customarily employ these measures in routine examinations.
It is our goal to ensure that all physicians and other healthcare providers implement low-cost, noninvasive screening techniques to identify infants, children and adults with symptoms of autonomic dysfunction, and to refer these identified patients for further screening and treatment.
With diagnosis, outcome can be affected. Not all SIDS deaths can be prevented, at present, but parents who know that their infants have autonomic dysfunction can arm themselves to defend those infants from sudden death, and many deaths can be avoided by health management techniques. Adults who become aware of their autonomic insufficiency or failure can also take action to prevent sudden death, and / or prepare for adequate resuscitation. School children who are identified as at-risk can be directed into the proper patterns of behavior and otherwise protected from injury, disability, and death. Death among athletes can be reduced, as demonstrated in Italy’s screening program [See research].
AMSAD has designed a number of specific programs to assist us all to reach these laudable goals. Each program is designed to address a particular need of patients and their families, undiagnosed individuals, educators, healthcare providers, or the general public. Each program is designed to assist in the reduction of deaths and disabilities, through education, research, and implementation of proven techniques.