Who We Are
Mission Statement and Action Plan:
Our mission: to raise awareness about Fetal Alcohol Spectrum Disorder (FASD) through education, support and research-based training to family members, caregivers, and professionals living with, caring for, and working with individuals with an FASD.
- targeted awareness campaigns that focus on the experience of caring for and being a person with FASD;
- trainings and presentations about best practices for FASD care based on a neuro-behavioral model, for parents, professionals, and the general public; and
- providing scholarships and stipends for parents wishing to access trainings and workshops; and
- creating retreats and conferences and family camps for people caring for people with FASD; and
- breaking down the barriers that have prevented the #1 cause of neurobehavioral and neurodevelopmental disorders in North America from becoming widely understood by parents and caregivers, doctors, therapists, mental health professionals, teachers, and the general public.
Goal #1: . Plan and raise funds for family camp, fall 2017 or spring 2016.
Goal #2: Plan and raise funds for 20 national parent/professional trainings, 2016.
Goal #3: Start to plan the first international FASD Conference Devoted to the PEOPLE of FASD (2017).
Goal #4: Create a membership structure for FAFASD, to provide better educational opportunities and create a more sustainable organization.
Goal #5: Create a quarterly newsletter devoted to the PEOPLE of FASD.
Goal #6: Create a podcast devoted to the PEOPLE of FASD.
Goal #7: Create videos so that parents, professionals, and all involved can teach others about the needs of individuals with FASDs.
Continual goal: seek out training opportunities to teach parents, caregivers and professionals about the brain-based approach to FASD. ONGOING!
Board of Directors:
President: Linda Quirk
Linda Quirk is the parent of 3 children adopted out of foster care with FASDs. She is a mentor to other foster-adoptive parents, a parent to parent support person for Adoptive Family Support Network, and an advocate for special education. She was a graphic designer and a paralegal in another life.
Vice-President: Janet Schanzenbach
Janet Schanzenbach holds a BS in Political Science from Newberry College and and MPA from NC State University. She has worked for and with non-profits for much of her career. She has a son with FASD.
Secretary: Robin Henderson-Wiley
Robin Henderson-Wiley holds a BA in Biology from Adelphi University and a MPA from Long Island University, CW Post. Healthcare professional with 20+ years of successful leadership and management experience in non-profit, for profit, hospital and multi-site clinic settings. Specialty areas include mental health, substance abuse and dialysis. Robin also serves on the North Carolina State FASD Collaborative Committee, volunteers as a career coach at Dress for Success and serves on the Board of Directors for Club Horizon.
Treasurer: Tina Andrews
Tina Andrews is a Quality professional with an MBA and Masters of Education. Watching the struggles of her young son and adult brother, both exposed to alcohol prenatally, turned her interest in education and statistics toward finding ways to help those affected by FASD.
Founder/Training Director: Adrienne Ehlert Bashista
Adrienne Ehlert Bashista is a writer, publisher, speaker, FASD educator and FASD parent coach. She is the author of two children’s books about adoption and is the editor of and contributor to Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories . She has a BA from Bates College, an MSLS from UNC-Chapel Hill, and worked as a teacher and school librarian for many years. Her younger son has FASD. She lives in central North Carolina with her family.
Dr. Stephen Hooper, Member at Large
Dr. Stephen R. Hooper is a pediatric neuropsychologist with 27 years of experience in the field. He has spent the major of his career at the Carolina Institute for Developmental Disabilities at the University of North Carolina School of Medicine where he has directed a Child Neuropsychology Consultation Program where has provided neuropsychological assessments to children with a wide variety of neurological and neurodevelopmental disorders, including Fetal Alcohol Spectrum Disorders, Dr. Hooper also has a distinguished research record, a long history of working with trainees across a wide number of disciplines, and engaging in community outreach to both public and private agencies. He currently is the Associate Dean and Chair of the Department of Allied Health Sciences at the University of North Carolina School of Medicine.
Jerrod Brown: Member at Large
Jerrod Brown, MA, MS, MS, MS, is the Treatment Director for Pathways Counseling Center, Inc. Pathways provides programs and services benefiting individuals impacted by mental illness and addictions. Jerrod is also the founder and CEO of the American Institute for the Advancement of Forensic Studies (AIAFS), lead developer and program director of an online graduate degree program in Forensic Mental Health from Concordia University, St. Paul, Minnesota, and the Editor-in-Chief of Forensic Scholar Today. Jerrod is currently in the dissertation phase of his doctorate degree program in psychology.
RJ Formanek: Member at Large
Having obtained a diagnosis later in life has given RJ Formanek a number of unique insights about living with FASD and it is these nuggets of information learned along the way that he tries to share with others in the hope of fostering a better understanding. He shares stories of his own struggles and relates how his own brain dysfunction affected different areas of his life. Born in 1961, RJ was the child of a young mother who was not able to care for the child herself so he spent the next 15 years in and out of foster care and family care situations.
Since FASD was not recognized at that time he dealt with the effects of prenatal alcohol exposure on his own and relates stories of how, if things had been recognized earlier steps could have been taken to make life much easier. He is often able to express feelings and concepts that help caregivers and parents understand how brain damage can affect every aspect of a person’s life. Experience can be a great teacher.
RJ now runs one of the largest Facebook groups for people living with FASD, called “Flying With Broken Wings” and has enlisted others living with FASD to help administer the group and help others understand more about the challenges and rewards of living with FASD. He completed the FASD Certificate Program offered by the Anishinabek Educational Institute, in 2014 and is keen to take this new knowledge out to others who may need it.
Currently, RJ is involved in an FASD Day venture, in conjunction with Jodee Kulp. They have launched an awareness campaign called “Red Shoes Rock”. This fun, exciting way to start the conversation about FASD, by wearing red shoes has continued picking up steam (endorsed by NOFAS in the United States) ever since its 2014 launch.
When it comes to living with FASD, RJ is all about building on the positives and moving forward in whatever way suits that individual person. Understanding the spirit of the person and their needs and desires is only the beginning of a journey that can be both wonderful and intense for all involved. Knowing that people living with FASD want to help themselves, and honoring that fact can change the outcome incredibly, if given the chance.
It’s all about thinking differently, and it is that concept Mr. Formanek shares with all.
Karen Anderson: Member at Large
Karen J. Anderson is an educator in FASD and neurobehavioral disorders. She received her training through the Great Lakes Regional Training Center, MRFASTC, and fascets.org, with Diane Malbin. Karen and her husband are long-time foster and adoptive parents with six children, the youngest of whom has Fetal Alcohol Syndrome. She works with prospective foster and adoptive parents and serves on the board of directors for NOFAS – Missouri and the Missouri State Foster Care Advisory Board.
The following people have supported FAFASD through gracious donations of time, money, ideas, and advice:
all the parents who donated their children’s pictures for the video, The Faces of FASD
David and Emily Boynton
Anita and Rick Cohen
Anne Wescott Dodd
Thomas and Mary Graser
Home Performance NC
Pamela F. Hutchins
Laura Commander Mauck
Olga Milevich, translator for the Russian version of The Faces of FASD
Christina Pace, for her pro bono work designing the FAFASD brochure
Felix and Barbara Parker
Donald Craig Peterson
Karen and Mac Pullen
Martha M. Redding