The seeds of FASD Maine were planted in early 2017, when two mothers of children with undiagnosed FASD were introduced to each other through their children's speech pathologist - "I think your children may have some things in common". The moms themselves also had something in common - they had both spent many years seeking an accurate diagnosis for their children. They had seen multiple providers and received multiple diagnoses and treatments for their children, none of which completely or effectively addressed their children's shared symptoms. Finally, each of their children was diagnosed with a Fetal Alcohol Spectrum Disorder. In one case, a visit to a neuropsychologist in another state provided the answers they needed. In the second case, the child was diagnosed with an FASD by a provider who recognized the symptoms of FASD because, serendipitously, he had a family member whose child had recently been diagnosed with an FASD.
In July 2017 these moms attended the first FASD conference in Maine sponsored by the Maine Developmental Disabilities Council and FASD United (formerly NOFAS - National Organization for Fetal Alcohol Syndrome). FASD experts from all over the country gathered at Colby College for the "Northeast Conference on Fetal Alcohol Spectrum Disorders."
In early 2019 in another part of the state, a sibling of an adult with FASD came upon an archived Maine Public interview with one of these moms, the presenters, and sponsors of this 2017 conference. Although a nurse and a teacher, this family member had searched for years, to no avail, for support for her sibling. Listening to this interview, she learned that she was not alone. Professionals and other families were working to establish FASD-informed services and diagnostic capacity here in Maine.
These three women finally met and formed FASD Maine. Since 2019, FASD Maine has been working to prevent prenatal alcohol exposure/PAE and FASD, and make services and support accessible to those affected by FASD.
Work to increase awareness of FASD through outreach to families, providers, agencies, teachers, law enforcement, community stakeholders, legislators.
Direct providers, agencies, educators, and law enforcement to FASD-informed education and training; direct caregivers and families to FASD-informed training and support, thus increasing FASD diagnostic capacity, support services, and prevention of PAE/FASD.
Break down silos among stakeholders by bringing together individuals affected by FASD, their caregivers and providers, and agencies and policy makers.
Support the passage of the FASD ReSPect Act,S. 2238, H.R. 4151, a bipartisan bill that provides federal funding at the state level for FASD prevention and intervention, advances the research and development of well-informed public policy on FASD in order to ensure FASD-informed services for persons with FASD and their caregivers. Most importantly, the bill creates the structure for ongoing collaboration and development of well-informed public policy on FASD.
Address the stigma associated with FASDs by educating Mainers to understand the complexities of the disability, while honoring the strengths of those impacted, promoting an inclusive accepting culture.*
Reduce the co-occurrence of childhood trauma and FASD by working to improve access to early diagnosis of, and intervention services for those affected by FASD.
Cooperate with other FASD organizations and government agencies in their efforts to raise awareness and provide FASD education and training.
FASD Maine has recruited four Maine health centers serving prenatal and pediatric patients, for participation in the Boston Medical Center/PROOF Alliance HRSA funded Safest Choice Learning Collaborative. Through virtual education (ECHO), the Collaborative provides a yearlong training in prevention of PAE/FASD, FASD screening and diagnosis, and support of children, through adolescence, with suspected or confirmed FASD.
Janice Small NP, St. Croix Regional Family Health Center, Princeton, enrolled in the first cohort, June 2021. Dr. Andrea Tracy, Edmund Ervin Pediatric Center, Augusta; Dr. Sunee Lovely Passamaquoddy Health Center, Princeton; and Dr. Deborah Hagler Mid Coast Pediatrics, Brunswick have enrolled in the second cohort, which started May 2022.
*Adapted from the Alaska Fetal Alcohol Spectrum Disorders(FASD) Strategic Plan 2017-2022