National Organization on Fetal Alcohol Syndrome The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community Mon, 21 Aug 2017 17:11:23 +0000 en-US hourly 1 Supportive House for Young Adults Living with FASD Open for Business Mon, 21 Aug 2017 16:50:36 +0000 read more →]]> Aloha Community Platteville, the first supportive-living facility specifically developed for young adults with an FASD is open and accepting applications for residents. The house was developed by FASD Communities and is managed by program director Jamie Klein. They are ready to select the first four residents, who will live in a safe and healthy environment and learn agriculture, livestock farming, and other skills, while enjoying the beautiful  and peaceful surroundings of rural Wisconsin.

Contact FASD Coummunities, apply for residency, and schedule a visit to Aloha Community Platteville today!

Alcohol Community Platteville Now Accepting Applications

NOFAS Affiliate Spotlight: FASDinNC Wed, 26 Jul 2017 16:13:47 +0000 read more →]]>

WASHINGTON, D.C. – The National Organization on Fetal Alcohol Syndrome (NOFAS) celebrated the work of its North Carolina affiliate organization, FASDinNC, highlighting their hard work and advocacy on behalf of those with Fetal Alcohol Spectrum Disorders (FASD), an umbrella term describing the range of effects that occur in an individual who was exposed to alcohol before birth.

During the affiliate summit in June, FASDinNC was busy on the hill advocating for support to further awareness and research regarding Fetal Alcohol Spectrum Disorders (FASD). FASDinNC Coordinator Amy Hendricks met with Senator Richard Burr’s staff, where she highlighted that “Continued federal funding for the CDC and NIH FASD research are essential to help prevent FASDs and create new interventions for individuals affected by FASDs.”

Elizabeth Montgomery Lee with her Son Mak at the Capitol Hill office of Senator Thom Tillis.

“One of the biggest issues is the amount of information available,” said Montgomery Lee, an Education Specialist with FASDinNC. Elizabeth and her son Mak, who has an FASD, attended a meeting with staff in Senator Thom Tillis’ office. “It was important to us that the Senator’s staff took the time to listen and get a comprehensive understanding of the challenges living with an FASD brings.”

FASDinNC continues to do vital work on this issue at home. Outreach efforts include the delivery of trainings for professionals that work with women of childbearing age, as well as a social media campaign this past spring that reached over 225,000 18 – 44 year-old women across NC in just three months. In conjunction with this campaign, posters were printed and promoted by All Over Media on the back of bathroom stall doors. This signage appeared in restaurants and bars in Raleigh/Durham, Greenville, Wilmington and Fayetteville and were visible to the public for three months at each location, reaching up to 15,000 people per location per month. In addition, twelve NC Preventing Underage Drinking (PUD) Coalitions received and began distributing 800 pieces of FASDs materials/posters to convenience stores in communities across the state. The coalition members also began checking for mandated warning signage in ABC stores. Hendricks believes strongly that all places that sell and serve alcoholic beverages should have signage in prime view that promote the message that alcohol and pregnancy do not mix.

FASD Communities Seeking Program Director for Aloha Community Platteville Mon, 24 Jul 2017 15:56:18 +0000 read more →]]> FASD Communities, a not-for-profit organization dedicated to providing supportive housing and life skills to young adults affected by FASD and a member of the NOFAS Affiliate Network, is seeking a Program Director for its Aloha Community Platteville house in Wisconsin.

Located in Platteville, a one-hour drive from Madison, WI and Devenport, Iowa, and within a three-hour drive of Milwaukee and Chicago, Illinois, the facility is fully licensed and is move-in ready for the new director and residents!

This is an exciting job for someone who is compassionate, wants to make a difference in someone’s life and has the desire to build and replicate this program. The ideal candidate is a self-starter, is a leader and has strong communication and organizational skills, a business background, and must be compassionate towards young adults living with FASD.

Experience working with people with disabilities, at risk youth or social work is helpful. An understanding of FASD is also preferred, however FASD Communities will provide training in this area. Farming or agricultural experience is also a plus.

The Program Director will be responsible for developing appropriate programs for residents, hiring and oversight of additional staff, maintaining accurate documents and records, and adhering to licensing requirements. The Director reports to the President of FASD Communities.

The position could include housing for an individual or couple, and salary will be commensurate with relevant experience.

For more information including pictures of the Aloha Community Platteville house and property visit To apply, send your resume and a cover letter describing your relevant experience, knowledge about FASD, and why you are interested in the position to Gigi Davidson at FASD Communities.

NOFAS Affiliate Spotlight: Arkansas None for Nine Thu, 13 Jul 2017 17:53:43 +0000 read more →]]>

WASHINGTON, D.C. – The National Organization on Fetal Alcohol Syndrome (NOFAS) celebrated the work of its new Arkansas affiliate organization, Arkansas None for Nine, highlighting their accomplishments on the state level, and advocacy on behalf of those with Fetal Alcohol Spectrum Disorders (FASD), an umbrella term describing the range of effects that occur in an individual who was exposed to alcohol before birth.

During the annual NOFAS affiliate summit, Arkansas None for Nine Vice President Carol Rangel met with Senior Senator John Boozman in his Washington, D.C. office, as well as staff in Representative French Hill’s office. During the meetings, she talked about the impact of Fetal Alcohol Spectrum Disorders (FASD) on Arkansas, and the work her organization is doing to inform the public and provide support to those affected.

Arkansas None for Nine Vice President Carol Rangel with Arkansas Senator John Boozman.


“There are many challenges to advocacy for this cause,” said Rangel, “1 in 20 school children are affected by an FASD, including 80 percent of all foster kids.” Prenatal alcohol expsoure is the leading known cause of intellectual disability in North America, and it is 100 percent preventable. Unfortunately, there is an enormous amount of stigma around the disorders. Senator Boozman and his staff listened intently to what we had to say, as did the kind staff in Congressman Hill’s office. We were so happy to bring this incredibly important issue into the consideration of our federal delegation, and make our case for the vital federal funding FASD receives.”

On the state level, Arkansas None for Nine recently submitted a proposal to the Arkansas State Legislature to help expand the scope of FASD research. Interim Study Proposal 2017-020, brought by State Representative Deborah Ferguson and State Senator Keith Ingram. The proposal requests funding to examine the impact of FASD on the criminal justice system, and to research more effective methods to rehabilitate affected individuals. “FASD costs Arkansas over $53 million a year, and no small part of it is spent on incarcerating individuals with these disorders who go undiagnosed,” said Rangel of FASD and its impact on the criminal justice system.

During FASD Awareness Month this September, Arkansas None for Nine will host their fifth annual FASD conference on Thursday, September 14th, 2017 at The Summit church in North Little Rock, Arkansas from 8:30AM to 4:00PM. On September 6th, Governor Asa Hutchinson will sign a Proclamation declaring September 9th FAS Awareness Day in Arkansas.

Aloha Community Platteville Now Accepting Applications Mon, 26 Jun 2017 17:00:30 +0000 read more →]]> Aloha Community Platteville, an FASD supportive housing program in the rural college town of Platteville, Wisconsin, is seeking young adults living with FASD to be its first residents.

FASD Communities has purchased and furnished the four-acre property, a one-hour drive from Madison and Devenport, Iowa, and within a three-hour drive of Milwaukee and Chicago, Illinois. The  pilot program, the first of its kind in the Midwest, has completed all licensing requirements and has hired a program director effective July 1. The community will provide oversight, life skills coaching, and job mentoring as well as a safe environment.

If you or your loved one is living with an FASD, please fill out the Preliminary Application to be considered for residency. Also, visit the redesigned FASD Communities website for more information on Aloha Community Platteville and the organization’s leaders and advisors.

Dr. Stephen Greenspan Enshrined in the FASD Hall of Fame Mon, 26 Jun 2017 16:08:29 +0000 read more →]]> By Andrea Dressel

For his groundbreaking and dedicated work in support of individuals with Fetal Alcohol Spectrum Disorders (FASD), NOFAS inducts Stephen Greenspan into the Tom and Linda Daschle FASD Hall of Fame.

Dr. Greenspan has researched and written extensively on personal competence, social intelligence, adaptive functioning, parenting and discipline, and the problem of gullibility. He has explored many of these concepts in the context of developmental disabilities, specifically Autism and FASD. One of his most significant contributions is attempting to broaden the view of neurodevelopmental disorders to become more holistic, so that IQ is not the only point of reference for a diagnosis. With FASD in particular, he points out that affected individuals are mainly impaired by a lack of social and practical judgment, whereas outdated standards typically make their IQs—often above the cut-off—the sole determination of their eligibility for services.

In his co-authored paper “FASD and the Concept of ‘Intellectual Disability Equivalence’”, he states: Fetal Alcohol Spectrum Disorder (FASD) is a logical candidate for such an accommodation as (a) it (like ID) involves brain impairment, (b) people with FASD have adaptive deficits and support needs that are identical to those with ID, and (c) while many people with FASD do qualify as having ID, the majority do not, because full-scale IQ scores are typically too high. (241)

His original and insightful ideas have led him to be the most frequently cited authority in the Intellectual Disability section of the DSM-5. Additionally, professionals in many fields trust his conclusions due to his credentials and professional history.

In addition, Dr. Greenspan has defended individuals with intellectual and developmental disabilities—prompting exemption from the death penalty in several cases—by delivering expert testimony. This includes testifying last year in the Supreme Court case Moore v. Texas, where he successfully demonstrated that the defendant had a disability and therefore should not be executed.

Another important contribution Dr. Greenspan has made to the field of FASD is his paper “Why People with FASD Fall for Manipulative Ploys: Ethical Limits of Interrogators’ Use of Lies”, where he applies his research on gullibility and manipulation to situations where individuals with FASD get in legal trouble. In an educational YouTube video featuring Dr. Greenspan recorded by NOFAS, he states, “I think…the core deficit that causes people with FASD to get in all kinds of trouble includes not being able to predict the perspective of someone that is trying to manipulate them… that’s an illustration of not understanding how to present yourself in a light that is hopefully not going to result in prosecution.”

Dr. Greenspan strives to educate and inform judges on FASD and its implications in legal situations. In the same educational video, he concludes by saying, “I think that the more that judges and lawyers know about FASD, and are able to link it up with particular criminal types of behaviors, the more likely it is that justice will be the outcome.” (Also watch Dr. Greenspan’s remarks at a NOFAS press conference.)

Attorney Billy Edwards, Chair of the NOFAS Justice Task Force, who knows Dr. Greenspan and his work very well and has authored papers with him, is thrilled that NOFAS is honoring Dr. Greenspan, saying it is well-deserved. He adds, “Dr. Stephen Greenspan has done so much in the FASD community to help so many attorneys, like myself, better understand the importance between adaptive behavior skills and the IQ level of their client.”

Dr. Greenspan received his doctorate from the University of Rochester in Developmental Psychology, and then received a postdoctoral certificate from UCLA’s Neuropsychiatric Institute in Developmental Disabilities. His academic career has led him to teach and conduct research at various highly-respected institutions, such as Vanderbilt University, the University of Nebraska, the University of Connecticut, and the University of Colorado.

NOFAS expresses its deepest gratitude to Dr. Greenspan and on behalf of its affiliates and partners, welcomes him to the Hall of Fame.

NOFAS and ACOG Letter to the Editor in The Washington Post Tue, 30 May 2017 19:23:13 +0000 read more →]]> In a Letter to the Editor published this weekend in the Washington Post, NOFAS and the American College of Obstetricians and Gynecologists responded to a statement in a May 14 article in the newspaper that the science regarding the risk of light consumption of alcohol during pregnancy is “ambiguous.”  No research concludes that light or occasional prenatal alcohol exposure is risk-free.

Here is the letter that was published in The Washington Post:


By writing that studies are “ambiguous” in “Five myths about pregnancy” [Outlook, May 14], Amy Tuteur framed the issue of a safe level of alcohol use during pregnancy as an ongoing debate between opposing sides, each with scientific validity. In fact, the science is settled: There is no amount of risk-free alcohol use during pregnancy. This is the position of every scientific and public-health institute and medical and behavioral health association in the United States, including the Centers for Disease Control and Prevention, the National Institutes of Health, the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics.

A meta-analysis of 34 published cohort studies found an association between light-to-moderate levels of prenatal alcohol exposure — less than daily drinking — and developmental problems. Though other studies have not found deficits on a few specific behavioral measures, none has found any level of prenatal alcohol consumption that is non-toxic to human development.

While, in general, the lower the alcohol exposure, the lower the risk, critical genetic factors that make one pregnancy more vulnerable than another are unknown. Why tempt harm when all risk can be avoided? The best advice is a respectful but clear message encouraging mothers-to-be — with the support of their partners, family and friends — to set aside alcohol during pregnancy.

Tom Donaldson, Washington

 The writer is president of the
National Organization on Fetal Alcohol Syndrome.


Haywood L. Brown, Washington

The writer is president of the
American College of Obstetricians
and Gynecologists.

Prenatal Exposure to Opioids and Marijuana a Growing Concern to NOFAS Mon, 17 Apr 2017 16:27:05 +0000 read more →]]> New Mission Statement, Purpose and Strategic Objectives Reinforce Attention to Alcohol and Pregnancy, Add Focus on Prenatal Risk of Opioids, Marijuana and Other Substances of Abuse

NOFAS has extended its mission and priorities to include the dissemination of information about the prenatal risks of tobacco, heroin and other opioids, marijuana, cocaine and methamphetamine.

The new language underlines the NOFAS commitment to individuals and families living with Fetal Alcohol Spectrum Disorders (FASDs) and the organization’s attention to alcohol and pregnancy education and prevention, while now also addressing other substances of abuse known to harm fetal development.

Another new NOFAS objective is to spread information about healthy practices during pregnancy such as early prenatal care, proper nutrition, appropriate exercise, and approaches to reduce stress.

Read the new NOFAS mission statement, vision, purpose, and strategic objectives.

Upon the recommendation of NOFAS Board Member, Mark Skibbie, a new Strategic Planning Committee of the NOFAS Board of Directors, chaired by Douglas Waite, MD, was formed in the fall of 2016 to review the mission statement and other organizational language.

NOFAS Board Chair, Kate Boyce, Board Members, William Edwards, Leigh Tenkku Lepper, PhD and Sam Zakhari, PhD, and NOFAS staff also serve on the committee.

Increasingly, NOFAS is asked for information about the prenatal risk of using substances of abuse together with alcohol, and the national opioid crisis and the growing legalization of medical and recreational marijuana has brought these substances into the conversation about prenatal health and increased investment in research into their effects on human development.

View information on the prenatal risks associated with tobacco, marijuana, opioids, and other substances of abuse.

The committee also considered the persistent challenges the FASDs community has faced raising support from foundations and other non-government sources, due in part to misconceptions about the significance and facets of FASDs, a lack of resources and widespread interventions for individuals with FASDs, a resistance to alcohol avoidance messages, and a stigma surrounding the issue that can result in an attitude of blame rather than empathy toward birth families and individuals.

If a broader focus on all substances known to harm fetal development positions NOFAS as more appealing to private donors, the committee believes it could help expand resources to address the fundamental mission of NOFAS, the prevention of prenatal alcohol exposure and the development of greater resources for children and adults living with FASDs.


FASD Activities and Resources Expanding Through NOFAS Affiliates Mon, 03 Apr 2017 16:16:19 +0000 read more →]]> The number of organizations and advocates dedicated to addressing Fetal Alcohol Spectrum Disorders–and their influence and effectiveness–is steadily growing, leading to more education about Prenatal Alcohol Exposure (PAE) and more resource options for individuals and families.

Two organizations have joined the Affiliate Network this year,  FASD Northern California and Frontier Community Services in Alaska, bringing the membership to 33 organizations. FASD Northern California held a successful conference last month sponsored by University of California, San Francisco Children’s Benioff Hospital, featuring Sarah Mattson, a prominent FASD researcher and member of the Collaborative Initiative on Fetal Alcohol Spectrum Disorders.

Frontier Community Services provides quality services for people of all ages who have a disability from in and around the Kenai Peninsula Borough in Alaska, where FASD rates have been higher than other communities. Frontier offers FASD diagnostic services, a range of training programs, and other vital resources.

MOFAS, the Minnesota Organization on Fetal Alcohol Syndrome was the first NOFAS affiliate when the Network was founded in 2002. A powerhouse organization founded by former Minnesota First Lady Susan Carlson that sets the standard as a full service agency addressing all facets of the issue, MOFAS has an important influence in the FASD community beyond the Minnesota state lines and is the model for organizations addressing PAE and FASD.

Since the Network was established the capacity of its member organizations to meet the needs of their communities has grown sharply. Organizations such as Double ARC in Ohio provide desperately needed clinical services and almost all the affiliates regularly hold conferences, trainings, lawmaker briefings, support groups, or other community gatherings.

FASD Communities is dedicated to to providing supportive housing, vocational opportunities and life skills to young adults, and other member organizations hold youth summer camps or bring an important international perspective from Canada, United Kingdom and Australia.

The Affiliate Network itself is planning for the annual Affiliate Summit to be held June 12-14 in Washington, D.C. Affiliate representatives will exchange ideas, forge partnerships, and brief lawmakers about the challenges of FASD in their communities.

A primary topic of discussion at the Summit and throughout 2017 is the critical need to identify and secure funding. Federal support for non-research FASD projects is down nearly $10 million since 2014 resulting in the loss of the Substance Abuse and Mental Health Services Administration-supported FASD Center for Excellence.

NOFAS will be looking at private foundations and other potential donors this year to support the Network and is urging affiliates to expand their fundraising outreach.

NOFAS encourages organizations to apply to join the Network. The Affiliate Guidelines describe the mission and purpose of the Network, and any organization, university program, state agency, or Tribal organization can complete the two-page application and submit it to NOFAS for consideration by the Affiliate Executive Council.

An infusion of donations and grants in support of NOFAS and each Affiliate Network member organization is essential to turn the steady progress into truly meaningful growth and change that helps children and adults living with disabilities and reduces the incidence of PAE and FASD.


NOFAS Launches FASD Justice Task Force Mon, 20 Mar 2017 15:17:16 +0000 read more →]]> Under the guidance of William J. Edwards, a member of the NOFAS Board of Directors and a Deputy Public Defender in Los Angeles, California, Dr. Larry Burd, Director of the North Dakota Fetal Alcohol Syndrome Center, and Diane Smith Howard, Senior Staff Attorney with National Disability Rights Network, NOFAS has established an FASD Justice Task Force.

The Task Force is developing and presenting training conferences for legal professionals and other audiences, disseminating legal resources and materials, and will be advocating for the inclusion of FASD in State intellectual disability definitions, the enactment of sentencing mitigation statutes, and mandatory FASD training for criminal justice personnel, among other policy and legislative provisions.

Already this year, the Task Force has co-sponsored two enormously successful training conferences, one in Maryland in conjunction with the Maryland Court Appointed Special Advocates for Children Association, and in New Orleans, Louisiana, at Louisiana State University with over 30 national and local partners.

The Task Force will be adding new members this spring, and is currently planning or co-sponsoring training conferences scheduled for this year in California, Maine, and New York.

Visit the FASD Justice Task Force at for more information about the Task Force, its members, recent conferences, and to watch excerpts of training videos featuring Task Force members.

The page also includes numerous resources, including articles from the seminal double issue of the Journal of Psychiatry & Law edited by Mr. Edwards and focused entirely on FASD. Additional resources include the American Bar Association’s landmark FASD Resolution, in-depth information for legal professionals representing offenders living with FASD, case histories, and other invaluable materials and referrals.

Check back soon for upcoming conference dates and agendas, PowerPoint presentations on FASD topics within the legal arena, and for the new Task Force video for protection and advocacy attorneys. Contact NOFAS for more information or with suggestions.