Last month, the 30th International Conference on Spina Bifida and Hydrocephalus took place in Kuala Lumpur, Malaysia, bringing together 350 delegates from 30 countries around the world. The conference was organized by the Spina Bifida & Hydrocephalus Association of Malaysia (SIBIAM) in collaboration with the International Federation for Spina Bifida and Hydrocephalus (IF). This significant event marked a historic first, as it gathered individuals directly impacted by spina bifida and their families alongside healthcare professionals, policymakers, and researchers from diverse backgrounds. The conference aimed to foster an inclusive environment, leaving no one behind.
The delegates engaged in thought-provoking discussions and shared their valuable insights, focusing on the latest research and treatments related to spina bifida and hydrocephalus. They explored innovative approaches and shared best practices from their respective countries, aiming to advance disability inclusion and improve the lives of individuals affected by these conditions.
Among the participants, the Spina Bifida Support Group Foundation, Inc. proudly represented the Philippines. With 25 years of empowering Filipinos with spina bifida, the foundation's presence at the conference showcased its unwavering commitment to improving the lives of individuals with this condition. The delegation shared their experiences and insights, highlighting successful initiatives and challenges faced in the Philippines.
Bridging the Healthcare and Prevention Gaps -
A Multidisciplinary Team Approach with a Community At Heart
The theme of this year's International Conference for Spina Bifida and Hydrocephalus, "Bridging the Healthcare and Prevention Gaps - A Multidisciplinary Team Approach with a Community At Heart," highlights the urgent need for a holistic and collaborative approach to address the challenges faced by individuals with Spina Bifida and Hydrocephalus. The sessions have emphasized the crucial need to acknowledge the interconnectedness of healthcare and prevention in enhancing the overall health and well-being of individuals affected by Spina Bifida and Hydrocephalus, as well as our communities. By bridging the gaps between these critical aspects of health, we can create a more comprehensive and effective approach to healthcare delivery. Various workshops organized during the conference highlighted the significance of a multidisciplinary team approach, where healthcare professionals from diverse disciplines, including physicians, nurses, social workers, nutritionists, and mental health specialists, came together to share their knowledge and expertise. This collaborative effort aims to ensure that individuals with Spina Bifida and Hydrocephalus receive comprehensive services that address their physical, mental, and social health needs.
Philippines, Folic Acid Fortified Country
As our country progresses towards implementing Folic Acid Fortification, we deliberately decided to take part in the Large Scale Fortification Workshop. This workshop served as a beacon of knowledge, illuminating the critical importance of preventive measures to combat micronutrient deficiencies.
Throughout the workshop, we delved into the intricacies of Folic Acid Fortification, gaining a profound understanding of its cost-effectiveness in preventing devastating birth defects such as Spina Bifida and Hydrocephalus. The workshop provided a comprehensive overview of the scientific evidence, case studies, and successful implementation strategies from around the world. By equipping ourselves with this knowledge, we were not only inspired but also ignited with a renewed passion to work tirelessly towards the implementation of Folic Acid Fortification in our country.
Our unwavering commitment stems from the belief that every child deserves a healthy start in life, free from preventable diseases. Spina Bifida and Hydrocephalus have a profound impact on affected individuals, their families, and society as a whole. By fortifying staple foods with Folic Acid, we have the power to make a tangible difference in reducing the prevalence of these birth defects.
The Large Scale Fortification Workshop served as a catalyst, propelling us forward with a renewed sense of purpose. We are now equipped with the knowledge, tools, and unwavering determination to make Folic Acid Fortification a reality in our country. Together, we can work towards a future where every child is born with the opportunity to reach their full potential, free from the shadows of preventable birth defects.
Spina Bifida - Philippines Vision for the 2025
In preparation for the upcoming activities of the Spina Bifida Support Group Foundation, Inc., we actively listened and participated in two essential forums.
The first forum, titled "Stronger Together," is dedicated to SBH Youth, providing a platform for them to share their experiences living with Spina Bifida Hydrocephalus (SBH) and the impact it has on their mental well-being. This forum aims to create a supportive environment where young individuals can connect, learn from one another, and receive guidance in navigating the challenges they face.
The second forum, "Advancing Understanding on Urological and Mental Health Needs in an Ageing SBH Community," caters to the SBH Ageing group. Its purpose is to enhance our comprehension of the unique urological and mental health requirements of an aging SBH population.
Additionally, as we move forward, our aspiration is to establish not only a Youth group of individuals with spina bifida but also a robust support system for adults living with this condition. We recognize that adults with SBH face a distinct set of challenges, including employment opportunities, independent living, and long-term care. Our goal is to create a supportive network where adults with SBH can connect, share their experiences, and access resources tailored to their specific needs.
The event concluded with a renewed sense of purpose and commitment among the delegates to continue working towards a world where individuals with spina bifida and hydrocephalus can reach their full potential and live fulfilling lives. The 30th International Conference on Spina Bifida and Hydrocephalus left a lasting impact, reinforcing the need for ongoing collaboration and dedication to advancing disability inclusion and leaving no one behind.
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