Fetal Alcohol Syndrome, mental retardation at NOFAS
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National Organization on Fetal Alcohol Syndrome, Protecting children and families by fighting the leading known cause of mental retardation and birth defects
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“I'm the birth mother of a 39-year-old daughter with fetal alcohol syndrome. She was my fourth child, and I knew the moment she was born that there was something wrong. We started immediately with pediatric neurologists, doctors, specialists of every type and description. It went on for years and years and years. FAS was never mentioned. They suggested autism, aphasia, retardation, on and on. She doesn't have any of these things. She definitely has FAS.”
Joan Carter

NOFAS

The National Organization on Fetal Alcohol Syndrome (NOFAS) is the leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community. Founded in 1990, NOFAS is the only international non-profit organization committed solely to FASD primary prevention, advocacy and support.
 
NOFAS seeks to create a global community free of alcohol-exposed pregnancies and a society supportive of individuals already living with FASD. NOFAS effectively increases public awareness and mobilizes grassroots action in diverse communities and represents the interests of persons with FASD and their caregivers as the liaison to researchers and policymakers. By ensuring that FASD is broadly recognized as a developmental disability, NOFAS strives to reduce the stigma and improve the quality of life for affected individuals and families.

 

Strategic Plan

NOFAS - For the future of our children

 

Vision

A nation where all children are born alcohol free.

 

Mission

NOFAS strives to prevent alcohol use during pregnancy through primary prevention, advocacy and support.

Purpose

NOFAS educates the public, practitioners and policymakers about alcohol use during pregnancy and Fetal Alcohol Spectrum Disorders (FASD) the leading known preventable cause of mental retardation and birth defects, and a leading known cause of learning disabilities in children and adults.

Shared Values and Beliefs

We believe FASD is a national health crisis. Over 125,000 newborns every year are exposed to heavy or binge drinking—the highest risk for FASD. Alcohol and pregnancy education must be elevated to a higher public health priority, and medical and mental health care systems must better serve all families in need.

We believe society still does not see or understand the magnitude of FASD. Many myths and misconceptions about the risk of alcohol use during pregnancy remain despite more than thirty-five years of clinical research. Broad public education and media outreach must be sustained to teach the facts about FASD.

We believe that to open the minds of those who can make a difference, we must remove the addiction and maternal stigma. Alcohol dependence is a chronic, progressive disease that can be treated. Treatment works, saves money and prevents future FASD births. Shaming and punishing birth mothers perpetuates the crisis and misunderstanding of the issue.

We believe that …

  • FASD is the leading known preventable cause of mental retardation and birth defects, and a leading known cause of learning disabilities.
  • FASD annual births are higher than autism, and downs syndrome, cerebral palsy, cystic fibrosis, spina bifida and sudden infant death syndrome - COMBINED.
  • FASD prevention is at least ten-times more cost effective than the $1.4 million lifetime cost to treat one person with Fetal Alcohol Syndrome.
  • FASD can affect anyone regardless of ethnicity, income or educational level.
  • FASD is completely preventable.
  • FASD children and adults can succeed with treatment and appropriate strategies.
  • FASD birth mothers deserve therapeutic intervention and treatment.
  • FASD families and caregivers deserve a voice among researchers and policymakers

 

Strategic Objectives

  • Effectively communicate the significant risk and harm of prenatal alcohol exposure.

  • Promote national policies that enhance knowledge of FASD and ensure services for families.
  • Extend our reach through partnerships and coalitions.
  • Enhance our governance structure to lead the organization to our vision, mission and objectives.
  • Diversify and increase the revenue streams and resources to accomplish our mission.
  • Maintain our credibility and distinguished public standing within the FASD community and among the public at-large.
  • Ensure that our team has the focus of mission, the resources to be productive, and the passion to succeed.

Programs

The International Fetal Alcohol Spectrum Disorders and Alcohol and Pregnancy Clearinghouse

The state-of-the-art information and referral clearinghouse disseminates prevention messages and materials, responds to specific requests, and maintains the FASD resource directory and archived materials, among many other functions.

Medical and Allied Health Student Curriculum

Developed in 1993, comprehensive coursework for professional education students on all facets of alcohol and pregnancy and FASD using the bio/psycho/social model of disease is presented at Northwestern and Georgetown University Medical Schools and other professional programs.

Kindergarten through 12th Grade FASD Curriculum

The curriculum provides age-appropriate information about the consequences of prenatal alcohol consumption while simultaneously encouraging students to be tolerant and accepting of all people regardless of individual capabilities or disabilities. The curriculum consists of four, 30-45 minute units offering teachers the opportunity to easily integrate information on FASD and disabilities in a single-class format.

Public Awareness Campaigns

Public health campaigns include television and radio public service announcements, transit advertising, prevention materials, professional training and other multi-media components tailored for specific markets and target audiences.

Presentations, Trainings and Seminars

NOFAS reaches many thousands of professionals and advocates each year through a range of presentations and exhibits sponsored by NOFAS or as part of other conferences and meetings.

Alcohol and FASD Screening, Intervention and Referral

The multi-year initiative at select Community Health Center (CHC) sites screens both pregnant and non-pregnant women for alcohol use disorders, refers patients for services and screens children for Fetal Alcohol Syndrome.

Web-Based Training and Certification

This year NOFAS will offer web-based FASD training for medical and allied health professionals, and a NOFAS certification for FASD trainers.

Advocacy

Affiliate Network

The 19 member NOFAS affiliate network shares information and resources and functions as a coalition to promote primary prevention and the policy agenda.

Policy Agenda

NOFAS moves forward non-legislative issues such as the inclusion of FASD in the DSM-V in conjunction with its affiliates and other constituents. NOFAS also plans to hold consensus seeking forums with leaders from within our field on select facets of FASD.

Legislative Agenda

NOFAS advocates for increased attention to FASD in a range of federal legislation addressing women’s and children’s health, substance abuse, mental health, intellectual disabilities, education, juvenile and criminal justice, independent and transitional living, employment for the disabled and victims of crime legislation. The agenda is supported by policymaker briefings and gatherings of FASD and public health experts.

Media Outreach

NOFAS will continue to pitch news, feature and editorial coverage of FASD, alcohol and pregnancy and NOFAS, and respond to both accurate and flawed portrayals of the issue in mass media and popular culture.

Birth Mothers Network

The Birth Mothers Network is an international peer mentoring initiative consisting of FASD birth mothers and women who used alcohol during pregnancy.

Family Support

Family support consists of support groups and consumer advocacy and technical assistance to family advocates.

NOFAS Leadership Awards Benefit

Copyright 2001-2004 National Organization on Fetal Alcohol Syndrome