Resources- Specific Diagnosis Card Catalog- Fetal Alcohol Syndrome

Who to Contact

Fetal Alcohol Syndrome Family Resource Institute (FAS*FRI)
PO Box 2525
Lynnwood, Washington, USA 98036
(253) 531-2878
Fax: (253) 640-9155
E-mail: vicky@fetalalcoholsyndrome.org
Web: www.fetalalcoholsyndrome.org

The Fetal Alcohol Syndrome Family Resource Institute is dedicated to the preservation of families through the identification, understanding and compassionate care of individuals disabled by prenatal alcohol exposure. The institute helps by sharing the grief, healing the pain, and directing parents to agencies and programs that will give hope and help. FAS*FRI has local support groups with a directory that is included in their information packet and will give assistance to anyone wishing to start a group in their locality.

The Institute publishes a quarterly newsletter, FAS Times, that in included in membership fees, and brochures including, "Fetal Alcohol Syndrome," "Help Hope Healing for Birth Parents of Children with FAS/FAE," and "We Love Children with Special Needs, and We Vote." The Institute offers a new parent information packet that contains, Fetal Alcohol Fact Sheet, a copy of the newsletter, letters from parents and a listing of regional support resources. They have a reading list of articles and books that are available to members and collect information on physicians and researchers who treat/study the condition. This information is made accessible to members. They have a state wide 800 referral line.

The National Organization on Fetal Alcohol Syndrome (NOFAS)
900 17th Street, NW
Suite 910
Washington, DC 20006
202-785-4585 (phone)
800-66-NOFAS (toll-free)
202 466 6456 (fax)
E-mail: information@nofas.org
Web: http://www.nofas.org/

NOFAS is committed to raising public awareness about Fetal Alcohol Syndrome, the leading cause of mental retardation, and seeks to implement innovative ideas in prevention, education, intervention and advocacy. NOFAS takes a multicultural approach to prevention and healing among individuals, families and communities, because FAS touches people in all walks of life.

NOFAS publishes a quarterly newsletter, Notes on NOFAS, which is free, and has brochures available. They also have a state-by-state resource directory developed in conjunction with the Centers of Disease Control and Prevention, that can be purchased or can be requested from their own state. This comprehensive listing of services contains valuable information for physicians, health care workers, FAS program counselors, teachers, parents and others seeking quick and accurate information NOFAS sponsers community seminars, and a national conference; callfor further details.

Family Empowerment Network
University of WI Medical School
Department of Family Medicine
777 S. Mills Street
Madison, WI 53715
1-800-462-5254
608-262-6590
608-265-2329 (Fax)
Email: fen@fammed.wisc.edu
Web: www.fammed.wisc.edu

Family Empowerment Network (FEN): Supporting Families Affected by Fetal Alcohol Syndrome and Fetal Alcohol Effects. FEN is an international organization serving families and professionals. They provide: free informational packets on FAS/FAE; international resource/referral directory catalogued by state/province; quaterly newsletter, the FEN Pen; extensive loan library (videos, audio training tapes, books, fact sheets, etc.); trainings for parents and professionals; educational opportunities; annual retreat for families; and an annual national conference.

FEN is a program of the University of Wisconsin-Madison, Department of Professional Development and Applied Studies.

Where to go to Chat with Others?

FAS Link
FASlink is a free Internet maillist for individuals, families and professionals who deal with Fetal Alcohol Syndrome. Serves parents (birth, foster and adoptive), caregivers, adults with FAS, doctors, teachers, social workers, lawyers, students and government policy makers, etc.

FAS Adopt
Families who have adopted children with FAS or FAE who share together to cope with issues specific to their children's disabilities, like adoption subsidy, eligibility for services, working with the system, as well as strategies for helping their children thrive in their new families.

FAS Forum
This list is for professionals and families living with and working with individuals who were prenatally exposed to alcohol. The purpose of the list is to exchange information and support.

Family Village Discussion Boards

Learn More About It

Answering Your Questions about Fatty acid Oxidation Disorders

What is MCAD?

Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD)

Medium-Chain Acyl-CoA Dehydrogenase Deficiency
from OMIM

What is LCHAD?

Long-Chain Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD)

Long-Chain Acyl-CoA Dehydrogenase Deficiency
from OMIM

Short-Chain Acyl-CoA Dehydrogenase Deficiency
from OMIM

Very-Long-Chain Acyl-CoA Dehydrogenase Deficiency
from OMIM

Links

The FOD Network On-line Newsletter!

Center for Inherited Disorders of Energy Metabolism

James William Lazzaro Foundation