National Organization on Fetal Alcohol Syndrome https://www.nofas.org The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community Thu, 20 Apr 2017 20:06:44 +0000 en-US hourly 1 Prenatal Exposure to Opioids and Marijuana a Growing Concern to NOFAS https://www.nofas.org/2017/04/17/prenatal-exposure-to-opioids-and-marijuana-a-growing-concern-to-nofas/ Mon, 17 Apr 2017 16:27:05 +0000 https://www.nofas.org/?p=8054 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.

 

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FASD Activities and Resources Expanding Through NOFAS Affiliates https://www.nofas.org/2017/04/03/fasd-activities-and-resources-expanding-through-nofas-affiliates/ Mon, 03 Apr 2017 16:16:19 +0000 https://www.nofas.org/?p=8002 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.

 

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NOFAS Launches FASD Justice Task Force https://www.nofas.org/2017/03/20/nofas-launches-fasd-justice-task-force/ Mon, 20 Mar 2017 15:17:16 +0000 https://www.nofas.org/?p=7969 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 nofas.org 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.

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Elizabeth Hitchens https://www.nofas.org/2017/03/03/elizabeth-hitchens/ Fri, 03 Mar 2017 19:44:17 +0000 https://www.nofas.org/?p=7951 read more →]]> By Andrea Dressel

        Elizabeth Hitchens

Ralph, Janet and Elizabeth

 

 

 

 

 

 

 

 

Earlier this spring, I got the chance to sit down with Elizabeth Hitchens and her parents, Janet and Ralph, to talk to them about Elizabeth’s journey as an adult living with FASD. Elizabeth is currently 28, and her parents adopted her from Russia when she was 5. They didn’t know at the time that she had FASD, and they will never know the extent to which she was prenatally exposed to alcohol. But as she grew up, cognitive and learning differences led them to believe that she may have a disability. It wasn’t until Elizabeth was eight years old that a geneticist informed Ralph and Janet that she may have FASD, which at the time was called fetal alcohol effect (FAE).

Talking with Elizabeth and hearing her tell her life story was a pleasure; she is articulate, honest, kind, and has a great sense of humor. The first thing we discussed was her education, and she was not shy to inform me that it had its ups and downs. FASD makes learning in a traditional classroom environment much more difficult, and she described to me the frustration she experienced trying to understand what the teacher was saying, “Being in the classroom with the teacher speaking… it was like a foreign language. They thought I understood but I didn’t, and that is why it’s hard for people like us with disabilities.” She went on to say that the bullying she faced in public school led her to attend a private middle school for children with disabilities, which was a much more positive experience. She graduated from a similar private high school in 2009.

Next, Elizabeth shared her employment experiences with me, and she explained that her FASD made it hard to hold a job. She said, “The boss would yell at me- or get very frustrated and I would say, “I’m sorry; I just didn’t realize.” Her time as a cashier in a convenience store, an employee in a fast food chain, and as a restaurant hostess all came to an end due to short-tempered bosses that didn’t take the time to understand Elizabeth’s differences. Typically, she only required a bit more explanation and training, but she wasn’t able to find such compassion in a mainstream work environment.

However, Elizabeth loves animals. She finds joy in them and is very good with them; she used to volunteer at an animal sanctuary and also helped care for farm animals when she lived in a group home for adults with disabilities in Montana. Janet echoed how much Elizabeth is drawn to animals and how much they are drawn to her: “They seem to sense something in her that they like.”

In addition to her care of animals, Elizabeth is also a dancer and actress. She has been an extra in a few productions, including the Disney Channel Movie Step Up 2. Although her FASD sometimes affects her memory, she has a knack for performing and memorization. Janet added, “Reading and math were hard for her [in school]. And yet the first time she got a script, when she was seven years old, for a summer theater program, she had her part memorized almost immediately, before anyone else.”

Elizabeth’s FASD continues to affect her day to day life, and in the past has affected her decision-making skills and led her to sneak out, steal from her parents, and enter into manipulative and harmful relationships. The most difficult part about FASD, according to Elizabeth, is that it is a hidden disability. “I don’t look like I have a disability” she said, “So people assume that I can do everything. When I try to explain it [to others], it’s hard, because I want to go out and do fun stuff like regular people my age.” Yet her experiences growing up and living with a disability have made her extraordinarily compassionate and understanding: “I have a strength that is empathy for people with disabilities and I don’t judge them. I like to hangout more with people with disabilities because I relate to them more.”

Later in life, Elizabeth would like to become a spokesperson for FASD and give a voice to everyone with FASD that doesn’t have support. She has begun to vocally advocate for a group home for adults living with FASD. Ralph added that an organization in Wisconsin is opening up an FASD-specific group home, but it is strictly for men. Elizabeth and her parents believe that a co-ed, adult group-home that specializes in caring for those with FASD is an immediate need, because it can be difficult for people with FASD to function in a group home that includes adults with many different disabilities. Elizabeth described that, in her experiences in Montana, the staff was generally uneducated about FASD and frequently confused the symptoms with those of Autism. Moreover, such a group home would help people like Elizabeth form deeper social connections. Elizabeth says that “People like us who have FASD, we like to relate to each other.” She sincerely hopes that a co-ed, FASD group home comes to fruition by the time her parents are too elderly to care for her, so she is able to move there and lead a happy and purposeful life.

When asked what advice that Ralph and Janet have for other parents who have just found out that their child has FASD, they advised to “Get a formal diagnosis as soon as you can… Make sure the school knows what the diagnosis means and educate everybody.” In general, the public is widely uneducated about this disorder. Stories like Elizabeth’s can help people understand some of the issues caused by FASD, and how important prevention is as well as support services for those with FASD.

FASDs are 100% preventable. To learn more, visit nofas.org, and please consider making a donation. A gift to NOFAS will help raise awareness as well as support individuals and families living with FASD.

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NOFAS Congratulates Maryland CASA for Hosting Outstanding Symposium on FASD https://www.nofas.org/2017/02/02/nofas-featured-at-fasd-symposium-in-maryland/ Thu, 02 Feb 2017 15:55:10 +0000 https://www.nofas.org/?p=7869 read more →]]> NOFAS board members and staff provided support for a successful FASD symposium that was sponsored and hosted by Maryland CASA, titled Advocating For Children & Families Living with FASD.  The event was held in Annapolis, Marylandon January 27, 2017.

NOFAS board member William J. Edwards presented on FASD in the criminal justice system, and board member Doug Waite presented on the role of pediatricians in working with FASD.

The event was targeted towards workers at Maryland CASA (Court Appointed Special Advocates for Children) and had over one hundred attendees.

NOFAS Vice-President Kathy Mitchell was a featured presenter at the event, and NOFAS President Tom Donaldson served as moderator.

This symposium provided an expansive overview of diagnosis, treatment, prevention, and implications of FASD.  Attendees gained an understanding of FASD and how to advocate for needed intervention in the medical, social services, mental health, educational, and juvenile justice systems.

Photos: (click on photos to view larger)

Attendees

Brooke Lierman – Maryland House of Delegates

William J. Edwards, Esq. – Los Angeles County Office of the Public Defender

Dr. Douglas Waite, MD – The Keith Haring Clinic, Children’s Village

Dr. Larry Burd, Ph.D. – North Dakota Fetal Alcohol Center

Attendees

Tom Donaldson, NOFAS President

Kathy Mitchell, NOFAS Vice-President and Spokesperson

Cathy Allen – Parent of a child with FASD

Elizabeth, a young woman living with FASD, with William J. Edwards

Attendees at merchandise tables

Brooke Lierman – Maryland House of Delegates (at podium)

Lori James-Townes, LCSW-C – Maryland Office of the Public Defender

Meredith Jossi, LCSW-C – Maryland Office of the Public Defender (at left), with Lori James-Townes

Diane Smith Howard, J.D. – National Disability Rights Network

Leslie Seid Margolis, J.D. – Disability Rights Maryland

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NOFAS Responds to Statement on the Risks of Alcohol During Pregnancy Made in a Popular TED Talk https://www.nofas.org/2017/01/23/nofas-responds-to-statement-on-the-risks-of-alcohol-during-pregnancy-made-in-a-popular-ted-talk/ Mon, 23 Jan 2017 17:33:06 +0000 https://www.nofas.org/?p=7822 read more →]]> NOFAS objects to a statement claiming that moderate drinking is safe during pregnancy made by Dr. Sofia Jawed-Wessel in a TED Talk video posted his month that has been viewed over 500,000 times.

Dr. Jawed-Wessel is a sex researcher and an assistant professor of public health and health behavior at the University of Nebraska at Omaha.

TED is a nonpartisan nonprofit devoted to spreading ideas, usually in the form of short, powerful talks. TED Talks are influential videos from expert speakers on education, business, science, technology, and other topics.

NOFAS objects to the highlighted passage in the following statement by Dr. Jawed-Wessel in her 15-minute talk titled, “The lies we tell pregnant women:

“So how many of you ever had a stranger touch your belly during pregnancy, maybe without even asking your permission first? Or told what you can and cannot eat by somebody who is not your doctor, your medical care provider? Or asked private questions about your birth plan? And then told why those choices are all wrong? Yeah, me too. Or had a server refuse to bring you a glass of wine? This one might give you pause, I know, but stay with me. This is a huge secret. It is actually safe to drink in moderation during pregnancy. Many of us don’t know this because doctors don’t trust pregnant women with this secret.

The statement that it is safe to drink alcohol in moderation during pregnancy is inaccurate. According to the CDC and the U.S. Surgeon General, “There is no known safe amount of alcohol to drink while pregnant. There is also no known safe time during pregnancy or safe type of alcohol.”  NOFAS has detailed information on this topic, including research articles, videos, and statements from medical experts at nofas.org.

Blogger Jennifer Gunter posted a detailed response to Jawed-Wessel’s claim,  A Ted talk claims OB/GYNs lie to pregnant women about alcohol and sex. It’s wrong. Here’s why, that states in part:

“Alcohol is a teratogen. It has been proven to cause birth defects and no study has definitively established a safe dose…. Doctor’s aren’t keeping anything from women because we think they can’t be trusted, we just don’t have clear science to make a clear recommendation about a safe dose of a known teratogen.”

The top-rated comment on the TED Talk website for this video makes the point very well:

“I know that the choice to abstain from alcohol for 9 months is not an easy one, and maybe even near impossible for women who live with addictions, trauma, and other adversity. But especially for women who have the resources and support to willingly make that choice, this shouldn’t be framed as a sacrifice or violation of their individual rights – it should be framed as a well-informed decision to ensure the best possible outcomes for their child.”

Dr. Jawed-Wessel responded to this comment with additional statements that NOFAS objects to, such as: “I do know though that the medical community in the US inflates the danger of drinking in pregnancy.”

The medical societies that have issued position statements on alcohol and pregnancy have all followed the science in determining that the best advice is to abstain from alcohol due to the risk of birth defects. NOFAS strongly disagrees with Jawed-Wessel’s assessment, and believes that the medical community needs to do far more to educate people on the risks of alcohol during pregnancy.

While it is true that heavy and binge drinking during pregnancy pose the highest risk for the developing baby, the unknown genetic risk makes it impossible to foresee the pregnancies that are potentially vulnerable or resistant to occasional light drinking. Moderate drinking is understood to be a higher rate of consumption than light drinking, so a broad statement that drinking in moderation during pregnancy is safe is wrong and reckless.

The meaning of the terms moderation and moderate are also unclear when referring to alcohol consumption. The scope of consumption amounts and patterns defined by consumers as moderate is wide-ranging.  Any message advising that all consumption estimated as moderate is safe is extremely irresponsible. Such a message can give individuals addicted to alcohol—who are most often in denial of their addiction—license to drink, and in the case of a pregnant woman place her developing baby at risk.

NOFAS objects to Dr. Jawed-Wessel’s advice that the public adopt her tolerance of risk and that the medical community conspires to mislead woman. The truth is practitioners and public health professionals follow the science and the principle of protecting newborns in encouraging alcohol-free pregnancies.

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Registration Open for FASD Criminal Justice Conferences in MD and LA https://www.nofas.org/2016/12/12/registration-open-for-fasd-criminal-justice-conferences-in-md-and-la/ Mon, 12 Dec 2016 17:18:56 +0000 https://www.nofas.org/?p=7690 read more →]]> William J. Edwards, a public defender in Los Angeles County, California, and a member of the NOFAS Board of Directors, has led the development of two legal training conferences to be held in Maryland and Louisiana in early 2017. Edwards, the editor of two landmark special issues of The Journal of Psychiatry & Law focused entirely on FASD, will present at both conferences along with numerous other national and local experts.

“Advocating for Individuals and Families Living with Fetal Alcohol Spectrum Disorders (FASD)” will be held at the Judiciary Education and Conference Center in Annapolis, Maryland on January 27, 2017. It is hosted by the Maryland Court Appointed Special Advocates for Children Association (CASA), and will feature, Dr. Douglas Waite, MD, Medical Director of The Keith Haring Clinic at Children’s Village in New York, and Dr. Larry Burd, Ph.D., Director of the North Dakota Fetal Alcohol Syndrome Center. Click here to view the agenda and to register.

On February 3, Edwards and Dr. Burd will be joined on the campus of Louisiana State University in New Orleans, Louisiana, by Diane Smith Howard of the National Disability Rights Network, and numerous legal advocates in Louisiana for, “Advocating for Individuals (and their Families) Living with FASD.” The conference  is open to the public, and attendees can register here.

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Alaska Students with an FASD Eligible for Special Education https://www.nofas.org/2016/12/12/alaska-students-with-an-fasd-eligible-for-special-education/ Mon, 12 Dec 2016 16:42:59 +0000 https://www.nofas.org/?p=7688 read more →]]> As reported in a notice from the Alaska Department of Education, Alaska has passed an education regulation change to include FASD as one of the possible qualifying health conditions for eligibility for special education.  The change also expands who can diagnose a health condition from “physician” to “physician or advanced practice registered nurse.” As a result, diagnoses from Alaska’s FASD Diagnostic Clinics headed by Advance Nurse Practitioners are recognized when an individual is seeking special education in the state.

In part, the regulations governing the qualifying requirements for the special education category “Other Health Impaired (OHI)” were changed to the following:

“(k) To be eligible for special education and related services as a child with other health impairments, a child must

(1) exhibit limited strength, vitality, or alertness due to chronic or acute health problems such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, fetal alcohol spectrum disorder, diabetes, or a heightened alertness to environmental stimuli, due to attention deficit disorder or attention deficit hyperactivity disorder; for a child to be eligible, a health impairment must adversely affect that child’s educational performance;

(2) require special facilities, equipment, or methods to make the child’s educational program effective;

(3) be diagnosed by a physician or advanced practice registered nurse as having a health impairment described in (1) of this subsection; and

(4) be certified by the group established under 4 AAC 52.125(a) (2) as qualifying for and needing special education services.”

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The Honorable Michael Jeffery Enshrined in FASD Hall of Fame https://www.nofas.org/2016/12/12/the-honorable-michael-jeffery-enshrined-in-fasd-hall-of-fame/ Mon, 12 Dec 2016 16:29:44 +0000 https://www.nofas.org/?p=7686 read more →]]> For his groundbreaking attention to Fetal Alcohol Spectrum Disorders (FASD) from the bench, NOFAS inducts Michael I. Jeffery into the Tom and Linda Daschle FASD Hall of Fame. Judge Jeffery served as a Superior Court Judge in the Second Judicial District in Barrow, Alaska until he retired in 2014 after a 32-year judicial career. He adapted his court activities for FASD-affected individuals, was a prominent figure in the passage of Alaska’s FASD mitigation legislation, and served on numerous statewide committees dealing with FASD and juvenile justice.

The Stanford University and Yale Law School graduate’s caseload included a substantial number of persons affected by FASDs, including felony and misdemeanor criminal action, civil litigation, probate and child welfare, child custody and juvenile delinquency cases. He served on the Alaska statewide Fetal Alcohol Syndrome Steering Committee and presented at numerous FASD trainings. He served as the Alaska Court System representative to the Alaska FASD Partnership and on the advisory board of the federally funded Arctic Regional FASD Training Center at the University of Alaska Anchorage. He has presented on FASD and justice system issues to the Alaska Bar Association, the Alaska Court System and at regional FASD conferences throughout the U.S.

Judge Jeffery was instrumental in the 2012 passage of the Alaska statute that explicitly allows its judges to reduce a felony sentence for an offender diagnosed with an FASD. As he wrote with Teri Tibbett, an advocacy coordinator on the Alaska Mental Health Board, “The statute promised more humane treatment for offenders [living with FASDs] and significant cost savings to the state.” They added that in order to realize this promise communities must move toward the, “Acceptance of Smart Justice,” best practices for providing effective services to lower the risk of criminal behavior by persons affected by an FASD condition, and for those individuals who do get involved in the criminal justice system.

On behalf of its affiliates, partners and members, NOFAS expresses its gratitude to Judge Jeffery for his leadership and compassion, and enshrines him in the FASD Hall of Fame.

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NOFAS Salutes Jerome Romero https://www.nofas.org/2016/11/14/nofas-salutes-jerome-romero/ Mon, 14 Nov 2016 18:05:56 +0000 https://www.nofas.org/?p=7618 read more →]]> Congratulations to pioneering advocate and dear friend of the FASD community, Jerome Romero the longtime Director of the Fetal Alcohol Syndrome Prevention Project at the University of New Mexico Center on Alcoholism, Substance Abuse and Addictions, a member of the NOFAS Affiliate Network.

Jerome has officially retired from UNM, but remains an active FASD leader in the state and nationally. For the past 17 years, Jerome has traveled nonstop from one end of New Mexico to the other teaching young women and men about the hazards of drinking during pregnancy.

Jerome has developed innovative peer-to-peer education programs and popular public awareness materials including public service announcements that air across the U.S. He was instrumental in forming the National Association of FASD State Coordinators and served as its director for many years.

An honored member of the NOFAS Hall of Fame, Jerome’s enthusiasm and passion for FASD prevention is both remarkable and inspiring, and thankfully he is still making a difference in the lives of countless families. Thank you and congratulations to Jerome, a dear friend of NOFAS and of everyone dedicated to FASD prevention and support!

jerome-romero-nov-14

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