Mary Kate Weber recently retired from CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) after a distinguished career with CDC’s Prenatal Substance Exposure Surveillance and Research team, which has worked at the forefront of our nation’s federal response to the public health challenges of FASD and prenatal alcohol exposure (PAE). FASD United is honored to continue serving as a longtime partner of CDC’s work, including our current role within CDC’s FASD National Partner Network (NPN).
Mary Kate Weber served for over 26 years at CDC and retired this past June. FASD United Communications Director Andy Kachor had the opportunity to speak with Mary Kate about her career, professional and personal highlights, accomplishments, lessons learned, and thoughts on the future of the FASD field.
Please note that all of Mary Kate’s statements are her own and are not official CDC statements.
FASD United: Hi Mary Kate, thank you so much for sharing your time with us. I’d love if we could start with an overview of your career and how you got involved with CDC’s FASD team?
Mary Kate: Thank you so much! I started at CDC in 1998 as a Public Health Prevention Service (PHPS) fellow. I then joined the NCBDDD Fetal Alcohol Syndrome Prevention Team (now called the Prenatal Substance Exposure Surveillance and Research Team) where I served as a behavioral scientist and worked briefly as a policy analyst supporting CDC’s FASD prevention efforts and programmatic work. Most of my experience over the years has been in the prevention space, and I have also been involved in some of the work we have done with individuals and families living with FASD.
My main role at CDC has been to provide guidance and expertise on evidence-based prevention interventions, communication research, policy, and partnership. Most recently, I provided support for the team’s efforts to enhance public health surveillance for FASD and offered subject matter expertise to the FASD National Partner Network
FASD United: What first drew you to want to work in the FASD field?
MK: I completed my fellowship program in 2001 and I was offered an opportunity to work at CDC at the NCBDDD within its, at the time, fetal alcohol syndrome (FAS) program. I had previously worked in the maternal and child health arena and thought that NCBDDD would be a good fit and an opportunity to delve into a public health issue, but I knew very little about alcohol use during pregnancy and FAS at the beginning. After talking to CDC’s FAS program team lead, Dr. Louise Floyd, I felt like my experiences and skills would be put to good use and I was eager to learn more about the topic.
FASD United: What aspects of your work at CDC did you find the most fulfilling, the most meaningful?
MK: I love the implementation side of things, looking at what things look like in practice. These efforts emphasized the importance of understanding facilitators and barriers faced in clinical settings that impact the success of implementing evidence-based interventions. Knowing this allows us to get things in place that really resonate with the populations they serve. A lot of the work I have done is around managing CDC-funded projects, and much of it has been around implementing and evaluating several evidence-based prevention interventions including Project CHOICES, and alcohol screening and brief intervention.
I found it very meaningful to really dig in to understanding the system-level challenges facing clinical settings; for example, even if a healthcare team is ready to implement alcohol screening and brief intervention in their clinic, they may run into obstacles they need to work through. They need system-level supports like staff training, protocols for documentation and follow-up, leadership buy-in, etc. We have learned a lot from this work and it has provided real insights.
FASD United: From your perspective, how has the FASD field changed and evolved over the years?
MK: When I first began working in this field, much of the focus was primarily on research and surveillance, looking at how to quantify the cost of PAE and FASD, for example monitoring alcohol use during pregnancy. That made sense at the time since the field was still relatively new compared to other conditions, so a lot of basic understanding needed to take place. With increased funding across multiple federal agencies, around the early 2000s, our efforts expanded to include areas like awareness and education of the public and healthcare providers about FASD and alcohol use during pregnancy, the development of interventions for women at risk for an alcohol-exposed pregnancy and children living with FASD. Public health communication research really evolved on these topics.
As interventions demonstrated effectiveness, we moved more into the translation and implementation of these evidence-based interventions, to put them into practice in real world settings and systems of care. We have learned a great deal. Progress has been made but we need to continue to move forward. There are new ways to reach our audiences through technologies like social media and the use of innovative teaching approaches to reach healthcare providers, enhanced partnerships across different sectors, and increased motivation to develop stigma-free messaging and interventions. I know that FASD United and other partners have taken the lead in connecting the dots across various sectors with which families interact.
FASD United: In terms of how we talk and communicate about FASD and PAE, how has that changed over the years?
MK: I think the field has become more inclusive in terms of having diverse perspectives at the table, including a wide ranging group of professionals who serve our populations and also people with living experiences of FASDs or alcohol use during pregnancy, to better understand the topic and its challenges and to implement enhanced and new approaches for the populations we serve. It has been great to have self-advocates involved. We are understanding that messaging has to be different to certain populations. We have to think creatively to reach people where they are with the messages that we are delivering. If I can borrow a phrase from FASD United, it is so important to get everyone a seat at the table and reflect the diversity of experiences to better understand the current challenges around FASD and approaches that are going to resonate with the populations that we serve.
CDC has supported several health communication research projects over the years exploring what women of reproductive age and healthcare providers understand and believe and what they know about alcohol use during pregnancy and FASDs, and what messages most resonate with them on this topic. These efforts have informed our work in provider education and training which most recently is being done through the FASD National Partner Network.
FASD United: What one thing are you most proud of from your career?
MK: I am so proud to have had the opportunity and privilege of working with many people over the years – researchers at CDC and in the field, clinicians, educators, advocates, and families – who are working tirelessly every day to address prenatal alcohol exposure and to support individuals with FASDs and their families. Hearing from the field has always been the most gratifying for me, to hear those stories on the ground from people who are living it.
FASD United: Can you talk about your experience working with the National Partner Network (NPN)?
MK: The NPN is made up of committed and passionate experts in the field who are doing such incredible work! It has truly been a privilege to provide subject matter expertise to the NPN and I am excited about the great work that has been accomplished! While it can be challenging to convene a lot of people to work together on a product, the outcome is often so much better when done collaboratively with others. Having all the different perspectives on resources for FASD has been such a valuable contribution of the network.
The NPN has also resulted in the cultivation of new relationships and collaborations across projects to amplify messages and improve provider education about alcohol and other substance use during pregnancy and FASD. We have worked on these collaborations in the past and I think the work is even more intentional and effective now. It has been an honor to be involved in the work of the NPN!
FASD United: We know there are quite a lot of ongoing challenges when it comes to addressing FASD. Can you share some lessons you have learned in how to move past these obstacles?
MK: It remains an ongoing challenge to convince people that alcohol use during pregnancy continues to be a problem that deserves attention. Alcohol is ubiquitous and widely available in the US so we need to continue to remind people of the risks associated with it, especially during pregnancy. Providing a forum and an opportunity for people to come together and discuss these issues makes the most sense to me if we are going to produce solutions.
Also, misconceptions about alcohol use during pregnancy continue to persist, causing confusion and skepticism among some populations. We need to continue to remind people about the risks associated with alcohol use during pregnancy and that help is available if needed.
Stigma continues to be a challenge. I think we are making progress by thinking more about our language as we are developing materials and getting input from people with living experience to make sure that what is produced is not going to offend or scare people. Some stigma relates to individual beliefs but there are also system-level factors perpetuating these challenges. Stigma is a complex problem that will require multi-level solutions.
FASD United: Can you describe how the work being done through the CDC is making a meaningful difference in the lives of families impacted by FASD?
MK: CDC’s work to address FASD has supported efforts over the years to educate and increase the capacity of pediatric providers to identify, diagnose, and care for individuals with FASDs and their families, which has resulted in increased understanding and awareness about this topic.
Also, NPN partners are currently incorporating living experiences of people with FASDs into their resources and training. An increasing number of projects are inviting self-advocates to share their experience and perspectives. More people with living experience are involved in creating and reviewing products and materials. The Lived Experience with FASDs video series showcases stories of individuals and families, and also offers their insights on specific topics like diagnosis, care, stigma, and resilience. These videos are powerful tools in raising awareness about FASDs but also in educating healthcare professionals and the public about this issue. A great standout moment for me related to this was when we recently had a watch party for our video series. It was powerful to hear families sharing their stories and providing insights to the public and health providers about topics like diagnosis, care, and resilience. We need to hear from those with living experience how they feel things should be done and hear from families about the challenges of getting care for their children. It was helpful to hear how grateful families were to have the opportunity to share their stories. Providing a platform for families hopefully helped them as they move forward in their journeys and empowered them to feel confident about talking with others about their stories.
CDC supported provider education and training efforts for many years. We have learned a lot about what works and does not work in reaching healthcare providers, which ultimately impacts individuals and families with FASD.
FASD United: How is the National Partner Network (NPN) impacting systems of care?
MK: I think the work of the NPN is a great example of how collaboration and synergies across professional disciplines and partner groups can result in better products and training resources on FASD and substance use during pregnancy. We know that people experience health care across multiple systems interacting with a wide range of professionals along the way. Having clinical and non-clinical professionals and partner groups communicate with their populations using consistent messaging can ensure accurate information is shared. This also allows for these messages to have a much further reach. The NPN helps to make this happen! The network has also served as a platform where the various projects can interact, problem-solve together, and foster innovation and creativity. In doing so, the NPN is making a real impact on systems of care.
FASD United: Where do you see the FASD field going from here and what path would you like to see for the future of CDC?
MK: I hope the field continues to build on the momentum of the current work that is happening with the NPN, while recognizing the changing environment that we live in.
I am hopeful that we will continue our reframing of prevention efforts – applying an inclusive approach that is FASD-informed and evidence-based to assure messaging and interventions are stigma-free and tailored to the audiences we serve. Prevention work is hard but I think it is so important for us to continue working in this area.
When it comes to FASD diagnosis and care, there is still a lot of work to be done; there is no national surveillance system and there is a great need for enhanced provider capacity to document PAE and recognize, diagnose and care for individuals with FASD. We also have limited information on FASD as young people transition to adults. There is so much to do in this space.
We need to continue to foster collaboration across federal agencies and the various projects and programs working in the FASD field. With limited resources, it will be especially important to work together to maximize and leverage resources, as well as to develop effective strategies and solutions that incorporate multiple perspectives and viewpoints.
FASD United: Can you share a professional highlight or standout moment from working in the FASD field?
MK: For me, a professional highlight was serving as the designated federal official for the National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect, a congressionally mandated advisory committee coordinated by CDC on behalf of the Secretary for Health and Human Services. This was a diverse committee comprised of researchers, clinicians, and national organizations with expertise in FAS prevention, diagnosis, and care. I learned a great deal about science and practice related to FASD prevention, diagnosis and care, intervention, and policy but also about how to organize committee meetings, manage workgroups, interact with a diverse group of partners, and shepherd various resources and products to completion. I feel proud to have been involved with this group.
The publication of two important Task Force reports was significant for the field and a standout moment for me. The first report was Preventing Alcohol-Exposed Pregnancies which summarized the research to date on this topic and included 10 key recommendations from the Task Force. The second was A Call to Action: Advancing Essential Services and Research on FASDs which summarized the main issues related to services and care for individuals living with FAS and their families and also included 10 key recommendations from the Task Force.
The Task Force writing teams and the Task Force itself deserve all of the credit in preparing these reports but I coordinated this effort and shepherded these documents through CDC and HHS clearance. And while publication of these reports occurred back in 2009, one of the reports, A Call to Action, is currently being revisited by FASD United and their partners as a springboard for current discussions and possible next steps moving forward! It is gratifying to see that the report continues to have value and provides insights into current and future efforts in the FASD field!
FASD United: Is there a personal or emotional highlight from your time at CDC that you would like to share?
MK: In terms of emotional highlights, I would say the first time I heard Kathy Mitchell, from FASD United, share her personal story was very powerful and moving for me. Personal stories remind us that there are real people behind the data facing challenging situations and overcoming obstacles. They also allow us to see the impact of our work and what we still need to do to better meet the needs of the populations we serve.
FASD United: It has been great hearing you share your incredibly valuable perspective from so many years with CDC. I would love to hear any closing thoughts you may have to share with us.
MK: It has been a real privilege to work on the FASD topic for these many years. I have learned so much and I deeply appreciate the connections I have made with the partners in the field. Working at the CDC has been a real blessing for me. Leaving has been bittersweet but I am hopeful for what lies on the horizon for the FASD field.