FASD United is excited to spotlight each of the organizations that are part of CDC’s FASD National Partner Network (NPN), a collaborative of organizations dedicated to reducing prenatal alcohol exposure (PAE) and substance use, enhancing support services and access to care, and improving the identification and health of children and families affected by FASDs.  As a proud participant in this collaborative effort from 2022 to 2026, we are excited to contribute to public education on FASD and prenatal substance exposure alongside these exceptional partners.  

This March, we are proud to feature Oak Ridge Associated Universities (ORAU), a key member of the FASD NPN.  I spoke with two members of the ORAU team: Betsy Smither, Project Manager and Qualitative Researcher, and Katherine Chyka, Health Education Specialist. 

ORAU began its FASD work by conducting research for CDC on how to best communicate with providers about PAE and alcohol screening and brief intervention (SBI). This research led to the development of “Let’s Talk”, a suite of over seventy materials for both patients and providers.   

Betsy told me, “I bring a research and evaluation perspective to our FASD work, and Katherine has jumped right in with a lot of communication expertise.”  ORAU works on actively tracking collaboration within the NPN and has seen a measurable increase in collaboration across FASD NPN organizations.  “Partners have seen the fruit of an enhanced emphasis on collaboration.  It has felt more and more like a true network working together in an organic way.” Katherine’s background is in health communication and her previous work focused on communication and messaging in the cancer space. Katherine reflects, “I was put on this FASD project my very first day at ORAU. It was  exciting to jump right in and meet everyone in the partner network.  I quickly learned just how multifaceted the FASD topic really is.”

As a “component C” recipient of the FASD NPN, ORAU’s work primarily focuses on coordinating efforts across the NPN to share information and resources and ensure consistent messaging, developing and fostering a cohesive, multidisciplinary FASD champions network, and collecting and integrating lived experiences of families affected by alcohol and other substance use during pregnancy and FASDs to inform messaging. 

“We see ourselves as a “behind the scenes” NPN partner, with the goal of making the work easier for the other partners on the project,” Betsy reflects. The ORAU team is proud of the skills and capabilities they offer the FASD NPN and their impact on facilitating relationships and enhancing products and materials. “We do our best to put our skills to work in bringing efficiencies and maximizing impact.  When the work of the partners is amplified and expanded, then we have done what we set out to do.”  Katherine adds, “We have been able to take some of the technical aspects off the plates of the partners so they can really focus on being the subject matter experts in their fields.  It’s really a privilege to support these experts with logistics, design, and technical aspects of products so they can be available for the many other wonderful aspects of this project.” 

ORAU has developed a range of products utilizing their technical capabilities.  For example, after hearing feedback that there was a real need for more bilingual FASD materials, Katherine had some of CDC’s “Let’s Talk” materials translated into Spanish. Additionally, Katherine has customized materials that included language written for medical providers and tailored it to be more relevant and appealing to social workers.  “We have a great opportunity to be helpful in our role by customizing materials so that they are uniquely resonate with each of the NPN audiences. It brings a lot of efficiency and message consistency when we can customize one material for a variety of different disciplines.” Katherine said. 

Recently, ORAU produced an incredible video series on the living experience of FASD.  Betsy spoke about how meaningful the entire experience was.  “I was honored to sit in the room with these powerful advocates, hear those conversations, be part of the editing, and help get the videos disseminated.”  

Going back to when the video series was first taking shape, Betsy reflects that, “When we do health communications, we want to be very tailored in who a product is for.  With this video series, we went in with a framework that these products would be mostly for healthcare providers.  It has been fun to find that, in addition to resonating powerfully with providers, the videos have really struck a chord with other audiences as well.  We have seen that the videos are really encouraging to families and people who are early in the process of getting more information about FASD.  I am confident that these videos will have a broader impact than we originally set out for them to have, and I hope this moves the community forward.  I feel encouraged that parents have been finding these videos, listening as a mother shares her story of moving forward when facing challenges in getting a diagnosis or services, and seeing how families are finding encouragement and strength from these stories.” Similarly, Katherine notes, “It is amazing that a video series that was designed primarily to appeal to, educate, and reach healthcare providers does such a beautiful job of rewriting the story on stigma and shame.  By confronting these topics head on, we are seeing an additional impact on families living with FASD.” 

The ORAU team hosted a video series virtual watch party in January. Katherine reflects on the emotion of the evening: “It was such a lovely way to pull everyone together and honor the experience and courage of the spokespeople.  You could really feel the love, reading so many supportive messages in the chat.” Betsy expressed that the event itself was such a joy, overflowing with positivity and warmth.  “Quantitatively, I’d say that about 97% of the comments we got during the event took the form of a compliment or a word of encouragement or a thank you.  It was fun to be surprised by the feel of the event.  It can be hard to have a lot of “feel” in a virtual event, but this one certainly did.” 

Katherine shared an impression to a video featuring Julie, who shares her story as a birth mother of a child with FASD.  A viewing party attendee commented, “Through the stigma and the shame, your bravery is helping us come out of the cloud of shame that we feel.”  Katherine knows how powerful this can be, and told me, “The courage of the spokespeople is empowering people across the world.” 

Rachel and Patima are a mother and daughter who share their stories together in the videos.  The ORAU team was moved by this feedback received during the watch party: “I can see the future for my daughter through you.  Thank you for giving me hope.”  As Katherine expressed, “When I hear that, I get chills, it’s so powerful.  The difficult things that these families have gone through are giving so much hope to others and helping them feel that they are not alone.  It is just incredible.” 

One of the key products ORAU has developed is the FASD National Partner Network Toolkit.  The toolkit includes custom resources that ORAU made, including communication resources, ready-to-use materials, templates and graphics and materials customized for the NPN.  For NPN members, “This is a great spot to get inspiration on what materials you’d like to get tailored to your audiences” as Katherine explains.  “It’s a great repository for shared messaging and shared graphics.  It helps to clarify what our key messages are as a collaborative and how we can all get behind these messages.”  By ORAU hosting this in a public platform, the materials are accessible to people outside the network, giving the public the opportunity to see what the NPN is doing.  Katherine says, “People from all over can make use of the materials in their own unique setting, whether that is a local context or even in a non-U.S. based setting.” 

Katherine talked about how much she loves working on ORAU’s Communications Bulletin, which is a series of bi-monthly e-newsletters filled with examples of materials and examples of NPN collaboration.  “I enjoy seeing how each of the organizations are collaborating.  It’s fun to be in the role of highlighting them and all their great work.  I’m continually impressed and inspired by the innovation and creativity of the collaboration.” 

Reflecting on the value of the NPN to the team at ORAU, Betsy says, “I love getting to work so closely with all the other organizations.  We get to take our skills and capabilities and marry them to the topical expertise of the organizations in the NPN.  We’ve seen up close how we can do exponentially more in a collaborative environment, rather than working individually.”   

Betsy adds that, “There is not a lot that we have done that we can say is 100% ORAU-produced, which really speaks to the network and the value of the network.  People are not doing their own thing and then pushing it out.  A lot of the products that we see in the NPN are joint efforts.  For example, a key part of the video series was in collaborating with FASD United, who connected us with the spokespeople that you see in the videos.”  Katherine adds, “Sarah Brown from FASD United was the perfect person to introduce the videos during the watch party in January, given her warmth and great spirit.  We deeply value the relationship we have with FASD United and the other NPN partners.” 

Katherine continues to be struck by the spirit of the partner network.  “There is such an energy in our meetings, this sense of collaboration, enthusiasm, and support.  There are such genuine connections that the organizations have with each other.  It makes it feel so worthwhile to put in that extra effort to enhance the collaboration, and we really do see the fruits of the labor in the products and in the energy of the partners.” 

Betsy points out that, “What struck me when we first started working with the NPN in the FASD topic space, is that there is so much consistency in messaging in the FASD field, which is very encouraging and helpful.  I have not encountered the competing messages that I sometimes encounter in other areas of public health, which is a real compliment to the community.  It’s refreshing to see organizations working together well and with consistent messaging, aligned around a common purpose.” 

As we started to wrap up our conversation, Betsy reflected on last year’s FASD Research Conference and being struck by the “horizontal nature of it” with so many families, researchers, people with living experience, and clinicians all coming together.  “It felt really unique from other health areas I have worked with.  There is so much benefit in having people all together and coming at the same issue from different angles that make up the whole picture.  We have loved working in the FASD space because of the community that exists and the groundwork that has been laid to form these connections and relationships.” 

Betsy summed up the feelings of gratitude and purpose felt by the team at ORAU, remarking that, “From our perspective at ORAU, the FASD NPN has been such a meaningful and rewarding process and we look forward to future work together and further opportunities for collaboration.”