Group items tagged

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome. 300 affiliate groups across the country. One of the largest non-government supporters of Down syndrome research in the United States

Only organization dedicated to providing families with the latest medical information, aggressively funding the most promising research, offering meaningful support, and raising public awareness and advocating for those living with the neurological disorder called Rett syndrome.Funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services

Only national voluntary non-profit membership organization in this field. Mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome. Offers resources and referrals to help people and their families cope with the problems that occur with TS. We raise public awareness and counter media stereotypes about TS. Membership includes individuals, families, relatives, and medical and allied professionals working in the field

Fragile X syndrome is the leading hereditary cause of developmental disabilities in all populations. The absence of a functional fragile X gene shuts off production of a special protein in the brain needed for normal cognitive development. Without this protein, children with the syndrome will never learn normally, despite hours of therapy and rehabilitation.

NHLBI ARDS Clinical Network web site. This site was established to provide information to the public on ARDS and the ARDS Network. In order to hasten the development of effective therapy for Acute Respiratory Distress Syndrome (ARDS), the National Heart, Lung, and Blood Institute, National Institutes of Heath, initiated a clinical network to carry out multi center clinical trials of ARDS treatments. The goal of the Network is to efficiently test promising agents, devices, or management strategies to improve the care of patients with ARDS.

Organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.

Custom-builds mobility devices for individuals with disabilities such as Cerebral Palsy, Spina Bifida, Muscular Dystrophy, Angelman Syndrome, Rett Syndrome, and visually impaired. Freedom Concepts Inc. (FCI) custom designed tricycles, walkers and chairs provide mobility and therapeutic benefits for thousands of special needs individuals throughout Canada and the U.S.

AAP Policy Statement - Surfactant Replacement Therapy for Respiratory Distress Syndrome

The Journal of Neurophychiatry & Clinical News - Neurophychiatric Practice and Opinion - Disorders of the Cerebellum: Ataxia, Dysmetria of Thought, and the Cerebellar Cognitive Afffective syndrome

National Library of Medicine - National Institute of Health - PubMed Article Abstract: Floppy infant syndrome - Review - On long-term follow up, cerebral palsy and mental retardation turn out to be the 2 most common causes of FIS. This review focuses on neuromuscular causes of FIS. With the advent of molecular diagnosis, a few conditions can be diagnosed by DNA analysis of the peripheral lymphocytes (myotonic dystrophy, spinal muscular atrophy); however, for the most part, electrodiagnostic studies and muscle biopsy remain as essential diagnostic tools for FIS.

The Fetal Hope Foundation's mission is to provide support, provide information, fund research, increase awareness and be an outlet for leading medical information pertaining to fetal distresses and syndromes. We are all about arming families and healthcare providers with information and helping to save babies' lives

PubMed Abstract - Early surfactant administration with brief ventilation vs. selective surfctant and continued mechanical ventilation for preterm infants with or at risk for respiratory distress syndrome. Purpose of the purpose of this review was to compare outcomes between two strategies of surfactant administration in infants with RDS; prophylactic or early surfactant administration followed by prompt extubation, compared with later, selective use of surfactant followed by continued mechanical ventilation.

PubMed - Effects of ethanol on the development of circadian time keeping system - Abstract: Ethanol exposure during gestation can have devastating consequences on the developing organism. Children who have a history of prenatally exposure to ethanol may show morphological and functional alterations, referred to as fetal alcohol spectrum disorders (FASD). Fetal alcohol syndrome (FAS), which is characterized by pre- and postnatal growth deficiency, specific cranial/facial features, and dysfunction of central nervous system, is the most severe end of FASD

Provides the reader with an overview of mental retardation, a developmental disability with a long and sometimes controversial history.

Hypotonia at WebMd

Hypotonia Information at NINDS - Includes description - treatment options - prognosis - research - clinical trials and organizations

Children's Hospital Boston - Hypotonia - Symptoms - Hypotonia and feeding disorders

PubMed Abstract: Environmental enrichment alters neurotrophin levels after fetal alcohol exposure in rats.

Hypotonia Definition and Causes at MedlinePlus, a service of the U.S. National Library of Medicine

PubMed Abstract of study to determine the association of hypotonia and depression in neonates at or near term with metabolic acidemia at birth (umbilical arterial pH<-12 mM).