Organizing and creating a collaborative unified voice of FASD prevention and
support
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives: NOFAS has successfully organized 41 national and international affiliates. NOFAS serves as a liaison to all federal agencies that address FASD, FASD researchers and has partnerships with key professional groups such as the American College of Obstetrics and Gynecology (ACOG) and American Academy of Pediatrics (AAP). Creating an environment of collaboration, communication and unity results in successful FASD prevention, legislation, and support for individuals and their families living with FASD.
Materials & Methods: NOFAS invited grassroots FASD groups across the U.S. join them to create change and awareness of FASD. The NOFAS affiliates communicate monthly and meet annually for FASD Hill Day and the NOFAS Affiliate Summit.
Results: Successes include securing legislation and appropriations, formation and participation of FASD task forces, partnering and sharing of materials and resources, fund raising, and collaborative media events. All share a common goal: to prevent FASD. Creating an inclusive, open system strengthened both NOFAS and their affiliates.
Conclusion: NOFAS and their 41 affiliates continue to evolve, grow and change. NOFAS affiliates are a creative, enthusiastic group that have conducted research, facilitated public awareness, and work together to monitor the government agencies that address FASD and to mobilize policy makers, professional groups, and systems of care. As Aesop taught us, “United we stand, divided we fall”.
The U.S. National Organization on Fetal Alcohol Syndrome (NOFAS): 25 years
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives: NOFAS was the pioneer in FAS and remains the U.S. national organization focused on FAS. NOFAS has orchestrated every hearing and briefing held on FASD. NOFAS serves as a liaison to all federal agencies that address FASD, FASD researchers, families living with FASD and has partnerships with key professional groups.
Materials & Methods: There has been much progress in the U.S. NOFAS has been involved (or aware) of all U.S. FASD activities for 25 years and has a timeline of past and current FASD activities, media, awareness campaigns, legislation, research, curriculum, parent groups, intervention and promising models for individuals with FASD, and outreach to birth mothers.
Results: Successes in the U.S. include 4 evidence based intervention models, the American Academy of Pediatrics has produced an FASD Toolkit, the Centers for Disease Control is prioritizing getting screening for alcohol a standard practice of care in primary health, FASD is now listed in the DSM, and the American Bar Association passed an FASD Resolution. Current problems in the legal system include recent laws that will incarcerate women for drinking.
Conclusion: The U.S. is making great strides in community and professional advocacy, but has a long way to go in addressing the stigma, blaming, and the over-simplification of FASD prevention.
Lessons learned from a cohort of birth mothers to children with FASD: The NOFAS
Circle of Hope (COH)
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives:
The Circle of Hope (COH) is a peer mentoring program designed to support birth
mothers. Women that have used alcohol or other drugs while pregnant are likely to drink in their
next pregnancy if they are not educated or provided support. Membership has expanded to over
600 members and includes state, agency, and international COH affiliations. Successes include the
peer mentorship, intervention and referral to treatment, the Women in Recovery Summits, and the
speaker’s bureau. In 2012 COH members were surveyed and 92 women responded.
Materials & methods:
The 32 question survey sought to capture a factual profile of the
characteristics of women that have drank while pregnant. Respondents included women from
America, Europe, Canada and Australia.
Results:
The confidential survey provided an opportunity to collect an honest report of alcohol and
other exposures from a cohort of women that are viewed as being difficult to obtain information
from. Women reported on their beliefs, behaviors and lifestyles and birth outcomes.
Conclusion:
Understanding why women drink while pregnant is an important first step in reducing
the stigma and developing prevention messages. Their stories are important in developing models of
intervention and policy. The bond between birth mothers has global reach. Countries from across the
seas can be connected to work together to support women to prevent FASD.
The NOFAS K-12 FASD prevention curriculum: an evidence-based model for
educating school age populations on FASD
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives:
According to the U.S. Surgeon General early education about healthy lifestyle choices
and behaviors is the most effective method to address major health concerns. The NOFAS
curriculum is designed to engage students and raise awareness about drinking during pregnancy.
The emphasis of the curriculum is on alcohol, addiction to alcohol and how alcohol can effect fetal
development. The lessons include the skills of making decisions, setting goals, and carrying out action
plans to meet those goals.
Materials and methods:
The curriculum includes four modules (K-2, 3-5, 6-8, and 9-12) and each
includes lesson plans and educational materials. Methodologies include a DVD, FASD Brain model,
youth book, and puzzles.
Results:
The curriculum is easily integrated into several different units in a standard health
curriculum. For instance, in the U.S., an average high school health curriculum is broken down into
several units including,
Alcohol Tobacco and Drugs, Reproduction and Pregnancy, Health Promotion and Disease
Prevention
covering a wide range of topics. A variety of instructional strategies and methods are
essential in addressing the many needs and interests of students.
Conclusions:
The curriculum has been disseminated across the U.S. and worldwide. The evaluations
reported that both teachers and students enjoyed the methodologies and both increased awareness
about drinking and pregnancy after receiving the lesson.
Red Shoes Rock 