Educational Component of the Administrative Core of the CIFASD

Goals 1) increase awareness of CIFASD published findings and the overall significance of CIFASD and its research among diverse audiences 2) increase the use of CIFASD findings as the evidence-base for developing and enriching public health prevention and clinical intervention strategies

Mission NOFAS brings CIFASD and its published research beyond academia and the scientific community to practitioners, educators, other professionals, and lay audiences, including the FASD community and the public at-large. NOFAS provides the perspective of the FASD family experience, the state of FASD policy objectives, gaps in services, public health challenges, and other real world insights.

Objectives Promote CIFASD scientists and findings through a minimum of six webinars Educate discipline-specific practitioners, school administrators and teachers, and public health professionals, about CIFASD findings through a minimum of 12 in-person presentations and trainings Educate students, local and state officials, NOFAS partners, and other FASD stakeholders and lay audiences about CIFASD findings through a minimum of six in-person presentations or trainings Promote CIFASD, its findings, and cifasd.org through NOFAS communication channels and social media feeds Maintain a CIFASD page on nofas.org linked to cifasd.org Host a Twitter Chat with NIAAA Promote CIFASD, its findings, and cifasd.org in response to inaccurate coverage of FASD and to media inquires

NOFAS Channels NOFAS Weekly Roundup (an electronic FASD newsletter disseminated each Monday) Social media feeds (Facebook, Twitter, YouTube – alcoholfreepregnancy) NOFAS Affiliate Network (41-member organizations in the U.S., Canada, U.K. and Australia) Partners - FASD Center for Excellence, American College of Obstetricians and Gynecologists, American Academy of Pediatrics. March of Dimes, Organization of Teratology Information Specialists (MotherToBaby), The Association of Women’s Health, Obstetric and Neonatal Nurses, Fetal Alcohol and Drug Unit: FASD and the Law, Community Anti-Drug Coalitions of America, National Association of State Alcohol and Substance Abuse Directors, The Association for Addiction Professionals NOFAS Information and Referral Clearinghouse NOFAS Webinar Series Trainings, presentations, and exhibits at international and national conferences and meetings Video production and dissemination

Since the CIFASD Annual Meeting NOFAS Webinar Series - Treating FASD with Nutritional Interventions; Presented by Dr. Jeff Wozniak Presented a two hour workshop for Howard University Medical School students and faculty; Washington, D.C. Co-hosted a U.S. Congressional briefing with the Friends of NIAAA (NOFAS is a FoNIAAA Executive Committee member) Lectured at The George Washington University Physicians Assistants Program; Washington, D.C. Hosted a Twitter Chat with CDC, NCADD and AAP Lectured at Georgetown University to pre-med and nursing students in a disease prevention class

NOFAS Goal: Link 1 researcher per DSW and identify 1 champion per DSW CDC FASD Practice and Implementation Centers (PICS), Discipline Specific Workgroups (DSW), and National Partners (PICs) University of Alaska Anchorage Baylor College of Medicine University of California, San Diego University of Missouri University of Nevada, Reno University of Wisconsin (DSWs) Social Work Pediatrics Ob-Gyn Nursing Medical Assistants Family Medicine DSWs Include: PICs National Partners: NOFAS, ACOG, AAP University of Texas (SW) University of Pittsburg NOFAS Goal: Link 1 researcher per DSW and identify 1 champion per DSW

Coming Activities/Events NOFAS Webinar Series – How Many People Have an FASD? An Overview of FASD Prevalence Studies; Presented by Dr. Phil May NOFAS Affiliate Summit – June 15-17 Capitol Hill Congressional FASD Advocacy Day – June 17 Twitter Chat with NIAAA on FASD Awareness Day, September 9 NOFAS International Gala, Embassy of France, Washington, D.C., September 17 Seeking to have September recognized as National FASD Awareness Month by the U.S. Department of Health and Human Services Lead partner in the International FASD Awareness Day with EUFASD, European alliance on FASD Planning a CIFASD video New NOFAS fact sheets and fact cards grounded in CIFASD science

NOFAS Publication Template - Slide 1 Catchy Title Key authors and their institution(s) Publication Publication Date

State the problem NOFAS Publication Template - Slide 2 What has prevented us from making progress in understanding fetal alcohol syndrome and developing better treatment What does this study bring to the table that changes this equation [Quote(s) from researcher for use in a news article or press release]

Summarize the Result NOFAS Publication Template - Slide 3 With perhaps a table or a figure – something that is visually easy to understand and someone could explain without too much trouble Be sure to have the take home if possible at the bottom of the slide so that it is clear what was learned

What Next? NOFAS Publication Template - Slide 4 What are the logical next questions to ask based on these results? Any obvious clinical translation? Will CIFASD be doing the next steps

Learning More About The Face of FASD [Title] Learning More About The Face of FASD Peter Hammond, Michael Suttie: University College London Tatiana Foroud, Leah Wetherill: Indiana University Joseph Jacobson, Sandra Jacobson: Wayne State University Christopher Molteno, Ernesta Meintjes: Univ. of Cape Town, SA H. Eugene Hoyme, Luther Robinson, Edward Riley: CIFASD

[State the Problem] To better treat FASD we must be able to identify those who were exposed We must improve our ability to accurate identify individuals exposed to alcohol prenatally Right now, we rely on particular physical features But this only allows us to identify a subset of the individuals We need to do better!

Facial effects in Fetal Alcohol Syndrome [Summarize the Result] Facial effects in Fetal Alcohol Syndrome Animated comparison of face of child with fetal alcohol syndrome to average face of typically developing children matched for age & ethnic background Heat map shows regions where the exposed child’s face is larger (blue), same (green) or smaller (red) blue on upper lip highlights lack of groove, emphasising its smoothness <START PRESENTATION> This is the face surface of a young Cape Colored boy diagnosed with FAS. <CLICK> This is a so-called heat map of where his face is statistically different in shape from age and ethnicity matched controls. Green indicates where his face surface coincides with the average of the age matched controls, red where it is contracted and blue where it is expanded. The red tip of the nose indicates his nose is short; the yellow higher up shows some flattening of the nasal bridge; red and yellow on the cheeks emphasise where his face is smaller and flatter; blue around the eyes is due to their relative prominence; blue on the upper lip reflects his smoother philtrum; and, the red chin reflects its reduced size and/or retrognathia. All of these features are more clearly shown if we morph between his face and the average of the matched controls. Notice the flattening of the mid-face, the smoothening of the philtrum, the backward rotation of the lower jaw etc.

Identifying the More Subtle Features of FASD [Summarize the Result] Identifying the More Subtle Features of FASD This study developed new approaches to identify children with heavy prenatal alcohol exposure who don’t have the classic facial features of FAS This study was able to identify those children who appeared to have some changes in cognition (thinking) but who would not have been identified as having heavy prenatal alcohol exposure

[Summarize the Result] Children with known heavy prenatal alcohol exposure in whom clinicians cannot detect the classic FAS features

matching effects on IQ & related measures [Summarize the Result] 3D face analysis subdivides the heavy exposure group into FAS-like & control-like matching effects on IQ & related measures HE1 FAS WISC IQ 65.5 65.4 HE2 Control WISC IQ 73.3 HE1 FAS-like HE2 control like

We are going deeper down into the iceberg of FASD Identifying those we could not identify before!

What Next? We are now using these same methods in children from other parts of the world to better understand the range of face changes we can see in FASD The goal is to take what we have learned from this study to develop an automated approach that can be used around the world to help doctors better screen for individuals who might have FASD