Advocacy Organization Celebrates 20 Years, Aims for Zero Alcohol-Exposed Births in Minnesota by 2028
The Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) marks its twentieth anniversary this year. MOFAS, a 501(c)3 nonprofit organization founded by former First Lady Susan Carlson in 1998, seeks to eliminate disability caused by alcohol consumption during pregnancy and to improve the quality of life for those living with fetal alcohol spectrum disorders (FASD) throughout Minnesota.
A key milestone for MOFAS has been zeroing in on an effective strategy to prevent prenatal alcohol exposure in complex cases. Although the science is clear that there is no known safe level of alcohol during pregnancy, many people need more than this knowledge to have an alcohol-free pregnancy. MOFAS advocates for a program called Family-Centered Long-Term Recovery Supports, which addresses root problems for women with a history of substance use disorders who are pregnant or parenting young children. The program works by connecting participants to existing community resources at a cost of only $705 per family per year. Only four of 298 participants birthed babies with prenatal substance exposure over a period of 3.5 years.
“FASD has been around as long as humans and alcohol have co-existed, yet prenatal alcohol exposure continues,” says MOFAS Executive Director Sara Messelt. “But we know what works and have an ambitious goal to prevent FASD entirely in Minnesota in the next twenty years.”
Another major contribution by MOFAS has been tackling the state’s severe shortage of FASD diagnostic capacity. An accurate diagnosis can help someone with an FASD reach their full potential, paving the way to needed services and supports, stronger treatment plans, greater understanding and acceptance, more realistic expectations, and better quality of life. Minnesota has fewer than 1,000 FASD diagnostic appointments a year, whereas 7,000 babies with prenatal alcohol exposure are born here annually. After advocating for greater diagnostic capacity with unsatisfactory results, MOFAS opened its own clinic—the second-largest in the state—in 2012. The clinic both alleviates some of the diagnostic capacity shortage and serves as a learning lab to highlight how MOFAS can best address the shortage statewide. In its first year the clinic assessed 11 patients, and in 2017 it assessed 112 patients.
MOFAS also provides the only voice at the Capitol for addressing FASD throughout Minnesota. Since 2008 the nonprofit has organized FASD Day at the Capitol and brought in advocates from all over the state. The first FASD Day at the Capitol in 2008 brought in 73 advocates who met with 42 legislators. In 2018, 183 advocates attended and met with 68 legislators. Examples of legislation MOFAS has been instrumental in passing include:
- Adding FASD as a “related condition” within the definition of “disability,”
- Securing a $500,000 appropriation to fund the Family-Centered Long-Term Recovery Supports program in Rochester and the metro area,
- Requiring paraprofessionals working with students on the spectrum to receive training on FASD,
- Requiring foster parents to receive one hour of training in their first year of licensure, and
- Appropriating ongoing MDH funding to carry out the MOFAS mission and increasing the original amount of $1.1 million to the current $2 million.
In addition, the organization has increased understanding of FASD among professionals, people with an FASD, and their families. “When educators, therapists, and other professionals are having a hard time working with someone and have no idea why, sometimes it’s because the person has an unidentified FASD, or because the professional doesn’t understand the person’s disability,” says Messelt. “Learning about FASD and gaining some strategies can make all the difference toward outcomes like helping a student truly have access to education and helping a client benefit from treatment.” MOFAS trained over 6,500 people last year—or 600% more than in 2005, the last year for which the organization has complete records.
MOFAS has several additional projects currently, touching virtually every aspect of FASD prevention and intervention, and has big plans for the future. The organization will grow its work substantially in the area of prevention, spending half its resources on prevention by 2020, as well as expand its work on education, justice, and health equity for people with an FASD. Messelt adds, “FASD presents all kinds of human rights issues we still have to address. Living with this disability doesn’t need to mean a person will have the dismal outcomes we see all too often today.”
The group will hold an anniversary celebration on May 10 at The Minikahda Club in Minneapolis to honor its founder, former First Lady and Board President Emeritus Susan Carlson.
About the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS): MOFAS works to educate the public that there is no known safe level of alcohol use during pregnancy and has been a hub of hope for families affected by fetal alcohol spectrum disorders (FASD) since 1998. MOFAS is the leading voice and resource on FASD statewide, providing education and support to prevent prenatal alcohol exposure, standing up for the rights of the FASD community, offering education and training so FASD is better understood, and guiding and supporting families through the FASD journey. For more information contact MOFAS at 651-917-2370 or visit www.mofas.org.
This site is provided to families and professionals as an informative site on Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorder (FASD). It is not intended to replace professional medical, psychological, behavioral, legal, nutritional or educational counsel. Reference to any specific agency does not necessarily constitute or imply its endorsement, recommendation, or favoring by MOFAS.