Prior to working in Los Angeles, Mr. Edwards worked with the Office of the Public Defender in San Diego and Riverside County, California. From 1999 to 2001, Mr. Edwards worked as a staff attorney for the Office of the Capital Collateral Counsel in Tallahassee, Florida. Mr. Edwards represented inmates under sentence of death in state and federal courts.

On a pro bono basis, Mr. Edwards represented inmates with intellectual disabilities or mental illness, from 1996 to 2001, on death row nationwide, including inmates in Texas, Nebraska, Mississippi, Louisiana and Florida. For three years thereafter, Mr. Edwards served as one of the amicus attorneys for Johnny Paul Penry, an inmate with intellectual disabilities on death row in Texas. In Penry v. Johnson ( 532 U.S. 782 (2001), a landmark Supreme Court case, Mr. Edwards and other amicus attorneys argued that the execution of people with intellectual disabilities violates both national and international law.

Mr. Edwards has authored numerous articles on the subject of people with intellectual disabilities in the criminal justice system. One of his publications was cited by the United States Supreme Court in Atkins v. Virginia 536 U.S. 304 (2002). Prior to the United States Supreme Court decision banning the execution of people with intellectual disabilities, he also consulted with and testified before many state governmental legislative bodies regarding problems people with intellectual disabilities face while in the criminal justice system. At the request of Temple University’s Institute on Disabilities, located in Philadelphia, Pennsylvania, Mr. Edwards wrote a training manual for attorneys who represent people with intellectual disabilities, which is used across the United States and in other countries such as Australia. From 2002 until 2005, Mr. Edwards served on the Faculty of the National Academy for Equal Justice for People with Developmental Disabilities at Temple University.

From 1997-1999, Mr. Edwards was honored with the Rosemary F. Dybwad International Fellowship, sponsored by the National Association of Retarded Citizens. This fellowship allowed Mr. Edwards to travel throughout Canada to train and educate Legal Aid Attorneys and Public Defenders in the area of intellectual disabilities and fetal alcohol syndrome/fetal alcohol spectrum disorders within the criminal justice system.

On May 11, 2006, Mr. Edwards was appointed by President George W. Bush to serve on the President’s Committee for People with Intellectual Disabilities. This is a federal advisory committee established by presidential executive order to advise the President of the United States and the Secretary of the Health and Human Services on issues concerning the lives of citizens with intellectual disabilities. In 2007, Mr. Edwards was an author for a report on people with developmental disabilities who are victims of crime. This report was sent to the White House.

On May 8th, 2008, Mr. Edwards was appointed by President George W. Bush to serve a consecutive two year term on the President’s Committee for People with Intellectual Disabilities. In 2008, Mr. Edwards was one of the authors of a report on Fetal Alcohol Syndrome.

On July 6th, 2009, Mr. Edwards was appointed to the editorial board of the The Journal of Psychiatry and Law. On November 3rd, 2009, he was appointed as special editor of a special issue on Fetal Alcohol Syndrome and the Law. Volume one (1) of this special issue was released in June 2011 and volume two (2) was released in September 2011.

Mr. Edwards has also served on a variety of committees, addressing people with intellectual disabilities and Fetal Alcohol Syndrome who get caught up in the criminal justice system in the United States and abroad, including:

• 1996-1998: Criminal Justice Process Committee Chair on the California Criminal Justice Task Force for Persons with Developmental Disabilities
• 1996 to 1999: American Bar Association, Young Lawyers Division, Criminal and Juvenile Justice Committee
• 1997-2000: American Bar Association’s Death Penalty Representation Project
• 1999-2002: Counsel for the American Bar Association’s Criminal Justice Section and the Commission on Mental and Physical Disability Law
• 2001-2002: Editorial Advisory Board of the American Bar Association, Journal of Mental and Physical Disability Law Reporter
• 2004-2006: California Governor’s Office of Emergency Services, Children’s Justice Act Task Force.
• 2006-2008: American Bar Association Commission on Mental and Physical Disability Law-Chair Criminal Justice Issues
• 1996-Present: Board of Directors of the Association of Retarded Citizens in Riverside
• 2010-Present: National Advisory Board for the National Organization on Fetal Alcohol Syndrome.
• Currently serves as a Consulting Editor for the American Association on Mental Retardation, Journal of Mental Retardation and as an editor (journal referee) for the British Journal of Learning Disabilities

Mr. Edwards has been an instructor, lecturer, guest speaker, and panelist for numerous institutions and has lectured both nationally and internationally, including New Zealand, Taiwan, England, Ireland, Greece, Canada, Scotland, and Australia. Mr. Edwards has had at least six people with FASD diagnosed since 2006. He is also working with the American Bar Association Center on Children and the Law with proposed Resolution on FASD to be passed in August.

Gwenolyn has worked extensively for the past 28 years in Indian affairs, both at the national and tribal level. She has worked for such national Indian advocacy organizations as the National Congress of American Indians and the National Tribal Chairmen’s Association. In addition, she has developed programs and organized training programs for the National American Indian Court Judges Association and the National Association of Community Health Representatives. She has served as editor for six national Indian publications. In 1990, Gwen was instrumental in founding the National Organization on Fetal Alcohol Syndrome (NOFAS). She has made a commitment to social change in working to address social issues that affect the health and well being of Indian people and barriers that oppress Indian women and children. She is the mother of three children, a son Brian, and two daughters, Genny and Rita. She has no grandchildren (and this is of deep concern to her), however, she does have one grand dog named Benny. It is for this reason that we shine this month’s community spotlight on Gwendolyn Packard (Ihanktowan).

NOFAS salutes the Center and its dedicated research staff for their invaluable contributions to creating a better future for individuals and families affected by FASD.

Jennifer Thomas received her Ph.D. from the University of Iowa in 1995, completed postdoctoral training at The Scripps Research Institute, and is currently an Associate Professor in Psychology at SDSU. She is on the Editorial Board of Neurotoxicology and Teratology and a member of the Education Committee of the Research Society on Alcoholism. Her research focuses on mechanisms of alcohol-induced brain and behavioral dysfunction, along with the identification of novel treatments.

Edward P. Riley received his Ph.D. in 1974 from Tulane University and is currently a Professor in Psychology and the Director of the Center for Behavioral Teratology at SDSU. He is the author of over 190 scientific papers and reviewed and edited the Handbook of Behavioral Teratology. In 2000 he was appointed by the U.S. Secretary of Health to Chair the National Task Force on FAS. He currently serves as the Co-Chair of the SAMHSA-sponsored FAS Center for Excellence. He has served as the President of the Research Society on Alcohol, the Fetal Alcohol Study Group, and the Behavioral Teratology Society. Last year, he received the NOFAS Excellence Award and recently the RSA Distinguished Researcher Award.

Dr. Mattson received her Ph.D. degree in 1994 from the SDSU/UCSD Joint Doctoral Program in Clinical Psychology. She is currently an Associate Professor in the Department of Psychology and the Associate Director of the Center for Behavioral Teratology at SDSU. She is the author or co-author on 38 publications and 7 book chapters. Recently, she has been studying aspects of attention and visuo-spatial functioning in children with FASD, the comparison between FASD and ADHD, and brain structure and function using brain imaging.

When Tyler was only 7 weeks old, Tim and Cindy Whitcomb were told by his adoption agency that he most likely had FAS. Cindy said that she and Tim felt in their hearts that Tyler had FAS, but also that he was meant to be their son. Tyler was finally diagnosed with FAS when he was 18 months old. Tyler is a bright, energetic young boy who has caught the attention of many, including former Senate Minority Leader Tom Daschle.

Cindy was asked to sit on the New York State FASD Prevention Task Force, where she gives input as a parent and caregiver of a child living with FASD. The New York State Office of Alcoholism and Substance Abuse Services (OASAS), which leads the Task Force, has pulled together health professionals, caregivers, educators, and others in order to press forward with FASD prevention in New York State. Cindy’s input is invaluable to the Task Force since she lives with the effects of FASD everyday. Currently, the Task Force is working on a statewide initiative to increase outreach and awareness, as well as train health professionals about the negative impact of drinking while pregnant.

In the past, Tim and Cindy also organized a support group in their hometown of Victor, NY, for families living with FASD. Cindy is still part of an informal support group, in which she directs parents/caregivers to resources for diagnosis and services. She also lends individual support and encourages those who call her; “I tell them they’re not alone.”

This May, the Whitcomb family joined NOFAS staff and state delegations from across the country for NOFAS’ Second Annual FASD Hill Day. They visited Congressmen Randy Kuhl and Steve Israel’s offices; and the Office of Senator Hillary Clinton to tell their story and gain support for the FASD Caucus in The House of Representatives and to lobby for The ‘Advancing FASD Research, Prevention, and Support’ Bill in the Senate. The Whitcombs continue to be advocates for families and individuals living with FASD.

In 1978, Dr. Streissguth collaborated with Dr. Ruth Little to develop methods to intervene in female alcohol abuse during pregnancy and prevent FASD. In 1989, Dr. Streissguth and her colleagues developed and evaluated the impact of a model advocacy program for helping high-risk women for three years after an alcohol or drug exposed pregnancy. This program is now run under the name of Parent-Child Assistance Program. For the past 18 years, Dr. Streissguth and her colleagues have worked with Native American Communities and the Indian Health Service to provide FASD workshops and direct consultations to American Indians and Alaska Natives.

The Fetal Alcohol and Drug Unit, which Dr. Streissguth directs, has investigated many types of prenatal influences on later development in offspring including alcohol, tobacco, cocaine, aspirin, acetaminophen, and rubella virus. Prior to this work, she studied the impact of poverty, preschool, and caretaking experiences on child development. In all, she has published over 160 scientific papers, three books, and a slide-teaching curriculum on Alcohol and Pregnancy. Her most recent books are: Fetal Alcohol Syndrome: A Guide for Families and Communities, Paul H. Brookes Publishing Co. and The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, University of Washington Press.

Dr. Streissguth has been honored with several prestigious awards and recognitions for her pioneering research on pregnancy and alcohol. In 1985, Dr. Streissguth was co-recipient with Dr. Paul Lemoine of France of the International Jellinek Memorial Award for Advancement in the field of Alcohol Studies. In 1987, with Dr. Ruth Little, she received an award for outstanding contributions from the American Medical Society on Alcoholism and Other Drug Dependencies. In 1992, the National Council on Alcoholism and Drug Dependence presented the Silver Key Award to Dr. Streissguth for her “outstanding contribution and research on FASD”. In 1997, she was awarded the University of Washington Outstanding Public Service Award, and the Rosett Award for her outstanding contributions to FAS research in 1998. In 2002, the American Psychological Foundation awarded her a Gold Medal for Lifetime Achievement for Psychology in the Public Interest.

Recognizing Dr. Streissguth’s pioneering research and exemplary service to the FASD world, NOFAS honored her with an Excellence Award in 2003. NOFAS and the FASD community have greatly benefited from Dr. Streissguth’s work and are very thankful to her longstanding dedication to FASD research, prevention, treatment and surveillance.

Dr. Coles has been an active member of several task forces, advisory committees and serves as an advisor and consultant to several non-profits and other organizations dealing with fetal alcohol spectrum disorders, developmental disabilities and alcohol related health studies. She was one of the founding members of the National Task Force on Fetal Alcohol Syndrome/Fetal Alcohol Effects and was also a member of the Advisory Committee, National Center for Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, in 2001. She was a member of the 1999-2001 FAS Work Group, Office of Special Education Programs, U.S. Department of Education, and the Committee to Study Fetal Alcohol Syndrome, Institute of Medicine, National Academy of Science between 1994 and1996.

Dr. Coles was awarded the Thomas J. Asher Award for the Prevention of Developmental Disabilities by the Atlanta Alliance on Developmental Disabilities in 2001. Her research focuses on developmental outcomes of teratogenic exposures, from infancy through adulthood. She has also focused on both the direct neurobehavioral effects of drugs of abuse and the interaction of these effects with postnatal environment in producing developmental psychopathology.

She is currently a guest editor for a special edition of the Journal of Pediatric Psychology focusing on children of substance abusers. In Atlanta, Dr. Coles participates in the FAS Task Force, formerly sponsored by the March of Dimes, and was a member of the Professional Advisory Council, Mission New Hope: A Substance Abuse Coalition for Metro Atlanta, established in 1992. Dr. Coles also is the Director of the Maternal Substance Abuse and Child Development Laboratory at Emory Psychiatry, a laboratory that conducts research on developmental effects of prenatal alcohol exposure.

NOFAS is extremely pleased to enshrine Dr. Claire Coles in the FASD Hall of Fame. Her contributions to the field are invaluable.

For details on the Marcus Institute, please visit: www.marcus.org/, for further information about alcohol exposure studies and about the effects of maternal substance abuse and alcohol in pregnancy, please visit: www.emory.edu/MSACD.

Julie and her husband Lynn live in Bothell, Washington, with the youngest seven children and have been licensed foster parents for the past thirteen years. Over the years, Julie and Lynn have fostered and adopted a combined total of twenty two children. Currently, she and her husband live with four adopted children and three children of whom they are guardians. These seven children along with her oldest biological daughter have all been diagnosed with fetal alcohol syndrome or related conditions.

Julie recently started NOFAS Washington, an affiliate of NOFAS. Along with her colleague Christie Connors, Julie has been successful in advocating for the issue at the international, national and state levels. She has worked on several programmatic developments along with NOFAS and other leading agencies in this field. Julie is one of the four founders and an intricate player in NOFAS’ Circle of Hope (COH), a nationwide support network of birth mothers of children with FASD. Julie continues to uphold her strength while diligently working to help NOFAS in making the COH one of the strongest support networks for birth mothers across the United States. This year marked the first official retreat for the COH. The success of the retreat was immensely impacted due to Julie’s presence and wise words. Julie recently lent her knowledge and years of experience to the attendees of North Carolina’s “Hope for Women in Recovery Summit: Understanding and Addressing the Impact of Pre-Natal Alcohol Exposure.” This two day summit, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA) and hosted by NOFAS, was attended by hundreds from the North Carolina government, substance abuse provider community and women in recovery who are at risk for having or who may have had a child with FASD. The attendees of the Summit were fortunate to receive first hand knowledge from Julie’s life experiences.

Julie has been a Family Advocate for the Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network core team at the University of Washington for over a decade. She is also a member of the Master Training Team for the Foster Parent Training Institute with the Department of Social and Health Services/Division of Licensed Resources.

Julie and her children participated in the preparation and filming of “Journey Through The Healing Circle” and helped prepare the video study guides for this this two-hour series of videos that was aired on PBS channels throughout the Pacific Northwest and Canada and made it to the finals for a Regional Emmy Award. Julie was also featured on a SAMHSA production, “Recovering Hope – Mothers speak out about Fetal Alcohol Spectrum Disorders”, a videotape that presents an intimate and evocative hour-long look at mothers and families of children affected by FASD.

A highlight of Julie’s personal and professional accomplishments has been organizing the annual FASD family summer camp. The first camp was held three years back out of which a group called “FASt Friends,” an FASD Family and Community Support Network, was formed. NOFAS’ staff participated at this year’s FASD camp as part of NOFAS’ collaborations initiative with several of its affiliates. To view pictures from this year’s summer camp, please visit: www.nofas.org/FASDSummerCampWashingtonState.htm

Julie Gelo is a true inspiration to birth families, adoptive and foster parents, social activists, spokespersons and many others who would like to make a difference to another person’s life. NOFAS is extremely delighted for the longstanding relationship that it shares with Julie and wishes her and her family the best for the future.

For more on NOFAS Washington, please visit: www.nofaswa.org

To order a free copy of the Recovering Hope video, please click here: store.health.org/catalog/productDetails.aspx?ProductID=16955

Vivian Botka became an FASD advocate inadvertently, while searching for services for her child and others like her. Vivian adopted her daughter Kristy at 6 months knowing she had problems, but unaware of the severity until she was diagnosed with an extreme case of fetal alcohol syndrome (FAS). Frustrated with the lack of services, she contacted professionals in the FASD field who advised her to replace her anger with advocacy which could lead to positive actions and better services for children with FASD and their families.

Vivian decided that educating her state was going to be the key in getting families the help they needed. Vivian participated in NOFAS’ Hill Day events and has continued to rally congress for services not only for her daughter, Krisy but other individuals living with FASD. Vivian met with Senators Richard Durbin and Barack Obama and sought their support in co-sponsoring FASD legislation and seeking additional funds for prevention and treatment programs. She spent countless hours on the phone finding out how other states created their Task Forces . She organized meetings with Illinois representatives who took an interest in FASD, and formed an alliance with Illinois Prevention First. Vivian’s efforts are slowly paying off. On September 19 2005, the day a comprehensive FASD legislation was reintroduced in congress, Senator Durbin, one of the original co-sponsers of the bill said, “I have met with many families in Illinois who have made real for me the challenges, the frustrations and the hope that come with fetal alcohol syndrome disorders. Vivian Botka brought a picture that her 22-year-old daughter Kristy had colored with crayons. Kristy requires around-the-clock care”.

Through her perseverance, she was instrumental in organizing the Illinois State FASD Task Force. Chaired by Illinois Representative Paul D. Froehlich and coordinated by Prevention First, the task force will determine the gravity of the problem in Illinois and evaluate measures of prevention, treatment and support for those affected by it. The Task Force is continuing to grow and Vivian’s goal of meeting the needs of individuals and families living with FASD is becoming a reality. The task force is only one of Vivian’s accomplishments in being a successful advocate for the issue. She works with the Arc of Illinois, the March of Dimes and other non-profits in the region to create more awareness for FASD. Vivian also is an information resource person and regularly refers people to appropriate services in Illinois.

NOFAS salutes Vivian and wishes her the best in securing the necessary services for Krisy as well as for a being a powerful voice and a champion for this cause.

Dr. Jones is the Chief of the Division of Dysmorphology/Teratology at the Department of Pediatrics at University of California San Diego and Medical Director of CTIS Pregnancy Risk Information. In these activities he has been involved in research, teaching, clinical work and University and public service.

Dr. Jones’ research has focused on the clinical delineation of birth defects, mechanisms of normal and abnormal morphogenesis and the recognition of new human teratogens. The work on recognition of new human teratogens is primarily focused through CTIS Pregnancy Risk Information, a service which he established under a different name in 1979 and which is funded by the State of California.

Dr. Jones has authored over 400 publications in scientific journals as well as several books, and is the author of Smith’s Recognizable Patterns of Human Malformation. As Chief of UCSD Medical Center’s Division of Dysmorphology/Teratology, Dr. Jones is in clinical service throughout the year, and trains fellows in dysmorphology. Teaching goes on virtually every day as he sees patients in clinics and serves as consultant on hospital inpatient services throughout San Diego County.

Dr. Jones is past president of the Western Society for Pediatric Research and president elect of the Teratology Society as well as the co-chair of the Scientific Working Group on Diagnostic Guidelines for Fetal Alcohol Syndrome Disorder, convened by the National Center of Birth Defects & Developmental Disabilities. He is also a member of 2 committees established by the Food and Drug Administration (FDA); the Pregnancy Labeling Advisory Committee and the Subcommittee established in 2000 to evaluate the continued misuse of Accutane during pregnancy. Dr. Jones also serves on various other boards and committees.

NOFAS honored Dr. Jones during its 2005 Leadership Awards Benefit in recognition of his long standing contributions to the FASD field. For more information on 2005 Leadership Awards Benefit, please visit www.nofas.org/FASFamiliesSalute.aspx

Diane became a NOFAS affiliate in January 2005 and has worked closely with NOFAS on several projects such as the Women’s Summit in North Carolina. NOFAS salutes Diane for all the great work she does and honors her through this Hall of Fame. Diane’s published work has been presented nationally and internationally. She teaches and consults with parents, educators, juvenile justice, health and social services providers, treatment professionals and others across the US and Canada. Through FASCETS, she is director of a three year fetal alcohol pilot project with the State of Oregon Services for Children and Families.

Diane brings a lot of expertise and personal experience to this field from raising two children with FASD. Diane is also a representative from Oregon for SAMHSA’s FASD Center for Excellence “Building FASD State Systems”. She has taught courses at the Universities of Oregon, British Columbia, Wisconsin-Madison, and other institutions. The Oregon chapter of the National Association of Social Workers named Diane the Social Worker of 2005. NOFAS is pleased to honor Diane Malbin through this Hall of Fame.

For information on FASCETS, please visit: www.fascets.org

In the early 1980s, Dr. Sulik and her laboratory conducted research that helped to establish alcohol as the causative factor in fetal alcohol syndrome. They discovered that, under controlled genetic and nutritional conditions, alcohol administered to mice during a particular time in gestation (the equivalent of heavy binge drinking during the third week of human pregnancy) resulted in craniofacial and other birth defects comparable to those occurring in babies of women drinking alcohol during pregnancy. These discoveries aided in the U.S. Government’s decision to pass the Alcoholic Beverage Labeling Act of 1988 which requires alcoholic beverage manufacturers to place health warning labels on all alcoholic beverage containers.

Since 1980, Dr. Sulik has continued her research on alcohol’s teratogenic effects, identifying the events in embryonic development that are adversely impacted by maternal alcohol use. During the past few years, she has extended her work by taking her science to the community, where she has engaged in targeted educational initiatives and developed creative programs to inform the public about the dangers of prenatal exposure to alcohol.

Dr. Sulik was a panelist at the 2005 NOFAS Briefing to the US Congress on fetal alcohol spectrum disorders. Dr. Sulik has also participated on the Fetal Alcohol Syndrome Center for Excellence Steering Committee. The Steering Committee is devoted to identifying, developing, and implementing means of preventing fetal alcohol syndrome. NOFAS is extremely glad to have worked with Dr. Sulik over the years and looks forward to working with her in the future. NOFAS is proud to honor Dr. Kathy Sulik through this Hall of Fame.

Teresa conducts regular trainings on FASD for the Arizona Department of Health, CASA, and Prevent Child Abuse, Inc. She has participated in a workgroup for the FAS Surveillance Project in Arizona for the Centers for Disease Control and Prevention. She is a certified FASD trainer for the National Association of Drug Court Professionals, the Native American Alliance Foundation, The Arc, and SAMHSA’ FASD Center for Excellence. Her popularity as a speaker is due to a combination of her personal experience and success as a parent, her extensive knowledge of current research, and her unique incorporation of original materials such as skits, poems, and props. She has recently been appointed as the FASD state coordinator for the Arizona Division of Developmental Disabilities.

Teresa is a member of the National Association of FASD State Coordinators and has presented workshops in the fields of education, medicine, and mental health. She has designed presentations on prevention, awareness, education, and intervention of FASD. With 30 years personal experience and 15 years experience in the field, Teresa provides support and information for families, consults with professionals, trains foster parents, and facilitates support groups for birth mothers, adoptive parents, and caregivers.

She offers classroom presentations to students of all ages and has presented at Pima College, Prescott College, and the University of Arizona. Teresa has produced a 16-unit college curriculum on FASD, a two-day curriculum for parents of teens, and a one-day seminar for adults affected by prenatal exposure to alcohol.

An accomplished web author, Teresa maintains a web site that reaches 50,000 visitors each month. She helped to found International FASD Awareness Day and has assisted groups all over the world in educating their communities about FASD through Awareness Day events on September 9th of each year since 1999.

NOFAS is extremely pleased to honor Teresa Kellerman for her courage and spirit.

Luther K Robinson, MD is an Associate Professor of Pediatrics at the State University of New York School of Medicine and Biomedical Sciences. He is Director of Dysmorphology and Clinical Genetics in the Division of Genetics of the Women and Children’s Hospital of Buffalo at Kaleida Health. Dr Robinson graduated from Oberlin College and earned his medical degree at the University of Cincinnati College of Medicine. Following a four-year commitment in the US Public Health Service, Dr Robinson undertook postgraduate training in the Department of Pediatrics at the University of California at San Diego. There he met Kenneth Lyons Jones, MD who would become his mentor in Dysmorphology (altered structural development). Dr. Robinson became interested in teratogens (environmental agents that cause birth defects), such as alcohol, and how exposures to these agents disturb normal embryonic and fetal development.

Dr Robinson is the former medical director of the New York Pregnancy Risk Network, a program that provides information concerning exposures in pregnancy to pregnant women and their physicians. Dr. Robinson was an inaugural member of the National Task Force on Fetal Alcohol Syndrome/Fetal Alcohol Effects (NTFFASE) and is involved in studies on fetal alcohol spectrum disorder in the United States, Russia, Europe, and South Africa.

Dr. Robinson has a longstanding commitment to providing medical services to under-served groups and served as the medical director of the Buffalo Parents and Children Together (PACT) program that provides medical care to children and families impacted by maternal substance abuse. Dr. Robinson is certified in Clinical Genetics by the American Board of Medical Genetics. NOFAS has worked with Dr. Robinson on several projects, and he has been instrumental in encouraging a local FASD group, led by Susan Rose to become a NOFAS Affiliate in New York. For all of his contributions and dedication to the field, NOFAS salutes Dr. Robinson.

Barbara is a clinical nurse, specialist trainer, and consultant in the area of Fetal Alcohol Spectrum Disorders and Alcohol Related Neuro-developmental Disorders. Her lengthy career in FAS/FASD/ARND advocacy and awareness began when she adopted a son, Rob, born in 1973, who was diagnosed with Fetal Alcohol Syndrome. Since then she has been instrumental in the development of diagnostic clinics and support groups that have been beneficial to those affected by FASD throughout Michigan and on a national level. In 2002 Mrs. Wybrecht created “Living and Learning with Fetal Alcohol Syndrome,” a summer conference to help individuals with an FASD to understand their disability and find better ways to live with it. She also coordinated a parent-mentoring program for teens, and women in treatment for substance abuse.

Currently, Barbara works as the Clinical Nurse Specialist for the FASD Diagnostic Clinic in Grand Rapids, Michigan and is a Field Trainer for SAMHSA FASD Center for Excellence. Additionally, she is a member of the FAS Juvenile Justice Work Group which is sponsored by the U.S. Department of Justice. Barbara is also an expert speaker on the various aspects of prenatal alcohol exposure. She has presented well over 1,000 workshops, most of which are provide basic information about FASD and related issues. Others are specifically for teachers, nurses, law enforcement professionals, mental health professionals, child welfare workers and parents themselves. Specialized workshops include those on FASD and Sexuality, FASD and the Law, and FASD across the Lifespan – Strategies and Interventions.

With her determination and perseverance as an example, her son, Rob has followed in her foot-steps to become an influential advocate for FAS in his own right. Rob Wybrecht is the only individual diagnosed with Fetal Alcohol Syndrome to serve on the inter-agency coordinating committee on FASD and he is a member of the steering committee for the FASD Center for Excellence under SAMHSA. He also participated on a task force that developed a peer education training on what to do if stopped by the police for people with disabilities. Rob conceptualized and developed a bumper sitcker about drinking during pregnancy (shown in the picture above) that he sells with proceeds going to FASD organizations. This project has been very successful and most importantly, quite healing for him.

NOFAS would like to offer our appreciation and congratulations to both Barbara and Rob Wybrecht on their outstanding contributions to FASD awareness, education and support!

“Trust your crazy ideas,” says a sign on Bonnie Buxton’s bulletin board. Along with her husband, Brian Philcox, Buxton came up with the idea of International Fetal Alcohol Syndrome Awareness Day (FASDay) in January,1999. “We were digging out our cars from the great Toronto snowstorm,” Buxton recalls. “Warming up over coffee, we realized that on 1999-09-09, a whole lot of nines would be coming together. What about using that date to remind the world that during the nine months of pregnancy, a woman should not drink alcohol?”

Adoptive mother Teresa Kellerman of Tucson, AZ, joined them as a coordinator. On the first FASDay, September 9, 1999, communities across Canada and the U.S., several European countries plus South Africa, New Zealand and Australia participated. “Now there are more communities than we can count,” says Philcox, who keeps records for the FASworld Canada website, www.fasworld.com

Buxton and Philcox became advocates for families struggling with FASD after their daughter Colette, now 26, was diagnosed with Alcohol-Related Neurodevelopmental Disorder (ARND) in 1997, aged 17. At that time she was addicted to cocaine and living on the street. “We knew that her biological mother had been an alcoholic,” says Buxton, “but we had no idea that this bright little girl was struggling with permanent brain damage.”

Buxton explains that individuals with ARND have seemingly normal intelligence, but will struggle lifelong with invisible learning and behaviour problems resulting from prenatal exposure to alcohol. ARND is the most common form of Fetal Alcohol Spectrum Disorder (FASD), which affects about 300,000 Canadian children and adults.

Bonnie Buxton is a journalist, editor and screenwriter whose articles have appeared in numerous Canadian magazines and newspapers. Her book about FASD, “Damaged Angels,” was published in Canada (Knopf, 2004) and in the U.S. (Carroll & Graf, 2005). A career communicator, Brian Philcox has worked in government, academia and the private sector. He is currently president of his local Rotary Club, focussing on issues related to the mental and physical health of children and adolescents both locally and internationally.

In 1999, Buxton and Philcox created FASworld Canada, a not-for-profit organization which provides a support group for parents in the Toronto area, gives workshops and FASD training for parents and professionals, and consults to families across Canada and worldwide.

Arizona’s Teresa Kellerman continues to partner with Buxton and Philcox, developing ideas for volunteers on the website www.fasday.com. On September 9, 2006, volunteers across Canada and the U.S., and many other countries – including the UK, both Irelands, France, Netherlands, Germany, Poland, Luxemburg, South Africa, Uruguay, Japan, Taiwan, Australia and New Zealand – will be participating.

Bonnie & Brian may be reached at info@fasworld.com