IF Webinar: ‘Prevention of Neural Tube Defects: Leaving No One Behind’

Prevention of Neural Tube Defects: Leaving No One Behind

A Webinar as part of the World Folic Acid Awareness Week 2025

On January 7, 2025, IF held a webinar ‘Leaving No One Behind’, dedicated to World Folic Acid Awareness Week, that provided invaluable expertise and experience from the public, private, and civic sector representatives. The theme “Leaving No One Behind” emphasised the importance of ensuring efforts to prevent Neural Tube Defects (NTDs) are sustained and maternal health outcomes are inclusive, equitable, and accessible to all individuals, regardless of their geographic location, socioeconomic status, or level of awareness. 

The webinar consisted of three panels of speakers from the private, public, and civic sectors, respectively. The opening words were shared by the IF President Victoria Sandoval and IF Secretary General Dr Sylvia Roozen. By welcoming the participants, the global aim of this annual awareness week and campaign was highlighted. The WFAAW serves as means to raise awareness about the prevention of Neural Tube Defects and promote healthy pregnancies, and emphasizing that the webinar serves as a starting point for discussions and contributions on folic acid interventions.

The first panel touched on the importance of food fortification as part of prevention initiatives. Scott Montgomery shared that the Food Fortification Initiative supports fortification programs through technical assistance, advocacy, and data collection. Progress is slow in some countries due to funding gaps, lack of knowledge, weak regulations, and political instability. The speaker emphasized the importance of a local champion to drive the agenda forward annually. 

Folic acid is a key component of flour fortification, added through premix to ensure consumer safety and program effectiveness. Premix suppliers play a crucial role by providing technical and logistical support to food producers, helping mills implement fortification successfully. This was emphasized by the second speaker, Leo Schulte-Vennbur from GAIN. The important role premix suppliers have can guide millers at every stage, including the initial steps of fortification.

The second panel deepened the understanding of how genetics influences mechanisms of NTDs and how it can be integrated into health, nutrition, and disability policies. Prof Dr Tizzano described that prevention should not be separated from care. When talking about prevention we should also keep in mind the lifelong care of persons affected by NTDs. He continued by describing the complexity of NTD genetics. The influence of the environment and susceptibility of genes play a role in the etiology of possible causes. He furthermore highlighted that science should not be separated from environmental influences such as nutrition. Data can really inform optimal communication towards families on etiology and routes to optimal care.  Prof Dr Finnell is the recipient of the IF Award in 2024 and studies Neural Tube Defects for over 45 years. In his speech, Dr Finnell emphasized that the scientific arena has changed a lot in the last 45 years. He described that it has been his lifetime challenge to understand the genetic variance and exact genetic susceptibility and the role of prevention since multiple genes play a role in the development of NTDs. This makes the situation complex for which more work needs to be done in the near and far future. 

The third panel explored how civil society actors, IF members, in three different contexts overcame barriers, built partnerships, and facilitated meaningful change in their countries. Kate Steele from SHINE shared about the United Kingdom’s adoption of mandatory fortification of non-whole flour with folic acid in 2024 and lessons learnt during their whole advocacy journey. As an important part of the journey in Malaysia, Tengku Ari shared important milestones that were set during the 30th International Conference on Spina Bifida and Hydrocephalus. As part of the conference, IF and SIBIAM organized a workshop to strengthen large-scale food fortification in Malaysia and in the region, leading to advocacy efforts that resulted for instance in the Kuala Lumpur Declaration, which is still welcoming consignatories. For more information see here. Ruth Nalugya shared that mandatory food fortification with folic acid was already adopted in Uganda in 2011. From their advocacy journey, SHA-U learned how important it is for SBH associations to work closely together with  small-scale millers in fortification advocacy and implementation strategies, particularly in low-income countries. 

These panel sessions were moderated by two youth leaders from the IF International Youth Group SBH. Kateryna Shcherbyna and Dr Nebiyat Tesfaye, members of the youth group, not only coordinated dialogues among panelists but also contributed to the discussions with their personal lived experiences as people with spina bifida. In their speeches, they emphasised on the need for promoting a more human rights based approach towards prevention, as well as the need for access to lifelong multidisciplinary care. By the contributions of Kateryna and Nebiyat, the youth is taking the lead in furthering discussions on how we can work together to leave no one behind. 

Conclusion

The WFAAW25 webinar showcased that no one should be left behind. Preventing Neural Tube Defects (NTDs) requires a comprehensive, multi-sectoral approach that includes partners from public, private, and civic sectors. The examples by IF Member Associations showed the unique role persons with lived experiences have in the advocacy of large scale food fortification as well as folic acid supplementation. Together with healthcare professionals, routes for optimal communication of diagnosis can be explored. Moreover, the reflections by partners with technical expertise on milling and nutrition policies showed there is progress, yet, more needs to be done.   Additionally, the participation of the IF International Youth Group SBH reinforced the importance of a human rights-based approach, advocating for both treatment and prevention as essential strategies.To achieve a full implementation of the WHA76.19 Resolution, closer partnership with all stakeholders should become a reality. The speakers shared very nice suggestions to inspire these actions and next steps.

Here are the main take aways from each panel:

• For the prevention of NTDs, it is essential to take a holistic approach by combining policies on health, disability and nutrition;
• The technical support of the private sector with planning, implementing and monitoring the work of millers is indispensable and their continuous support contributes greatly in prevention of neural tube defects; 
• Research and clinical practices in the field of genetics can inform pathways towards prevention as well as better routes to lifelong care;
• The success of advocacy relies on equal collaboration between public, private, civic partnerships. 

The Road Forward

A comprehensive approach to Spina Bifida and Hydrocephalus (SBH) has to prioritise prevention, management, and lifelong support for affected individuals. Advocacy and effective implementation strategies of mandatory fortification of staple foods with folic acid remains crucial for prevention. Additionally, good communication and access to lifelong integrated care are  elements to support individuals affected by SBH, their families and representative organisations. 

With this webinar at the start of the new year, IF intended to seize the opportunity to transform how the world addresses the challenges of malnutrition and the prevention of neural tube defects. IF will continue the dialogues with public-private-civic partners throughout the year and welcomes your active involvement!

You can watch the recording of the webinar here. For more information on this topic, read the Kuala Lumpur Declaration here and the WFAAW25 toolkit here. 

Do you want to learn more on what you can do to leave no one behind? 

Don’t hesitate to reach out by sending us an email at [email protected]