November 6, 2025 | Entoto, Addis Ababa
On November 6, 2025, HOPE-SBH hosted a Media and Celebrity Engagement Workshop in Entoto, Addis Ababa, bringing together media professionals, celebrities, and influencers to explore how their voices, platforms, and networks can contribute to greater awareness and advocacy for Spina Bifida and Hydrocephalus (SBH) in Ethiopia.
The workshop created a space for participants to learn about SBH, hear directly about the experiences of affected families, and discuss how public communication can help promote prevention, challenge stigma, and build greater understanding and inclusion.
Understanding Spina Bifida and Hydrocephalus
The day began with sessions introducing participants to the science behind Spina Bifida and Hydrocephalus, helping build a deeper understanding of the conditions, their causes, and the challenges faced by children and families living with them.
Particular attention was given to prevention, including the importance of folic acid, food fortification, and dietary diversification. These discussions highlighted the critical role that accurate and accessible public information can play in promoting healthier choices and preventing neural tube defects.
Bringing Family Stories to the Conversation
Beyond the scientific and medical discussions, the workshop also created an opportunity to hear the human stories behind SBH.
Stories from families living with Spina Bifida and Hydrocephalus brought a personal perspective to the discussion, helping participants understand the everyday challenges that children and caregivers face—from accessing healthcare and rehabilitation to education, mobility, continence management, and social inclusion.
These stories reinforced an important message: awareness is not only about understanding a condition; it is also about understanding the people and families behind it.
A Journey of Advocacy and Impact
Participants were also introduced to the journey of HOPE-SBH, including the organization’s growth, achievements, and continued commitment to prevention, care, advocacy, and inclusion.
The session provided an opportunity to reflect on the progress made over the years while emphasizing the work that remains to ensure that children and families affected by SBH receive the support and opportunities they deserve.
Turning Influence Into Action
One of the key moments of the workshop was an interactive brainstorming session where participants explored how media professionals, celebrities, and influencers could use their platforms to amplify SBH awareness.
The discussion focused on practical ways to:
- Increase public understanding of Spina Bifida and Hydrocephalus
- Share accurate information about prevention
- Promote the importance of folic acid and food fortification
- Challenge stigma and misconceptions surrounding disability
- Give greater visibility to the experiences of affected families
- Encourage communities and decision-makers to take action
The conversation highlighted the unique power of public voices. When accurate health information is communicated through trusted and familiar platforms, it can reach audiences far beyond traditional awareness campaigns.
A Visit to the House of Hope
The workshop concluded with a visit to the House of Hope, where participants had the opportunity to see HOPE-SBH’s work firsthand.
The visit offered a closer look at the organization’s efforts to provide rehabilitation, psychosocial support, continence-related care, and inclusion programs for children and families living with SBH.
For many participants, seeing these services and meeting the people behind the work provided a deeper understanding of why awareness and advocacy matter.
Building a Stronger Movement for Awareness and Inclusion
The Media and Celebrity Engagement Workshop was more than a one-day gathering. It was an opportunity to build connections between advocacy and the people who have the ability to shape public conversations.
HOPE-SBH believes that meaningful change requires collective action. By bringing together the reach of the media, the influence of public figures, and the lived experiences of affected families, we can create stronger conversations around prevention, care, disability, and inclusion.
As Ethiopia continues to work toward preventing neural tube defects and improving support for people living with Spina Bifida and Hydrocephalus, every voice has a role to play.
Together, we can use our voices, creativity, and networks to raise awareness, promote prevention, challenge stigma, and support families affected by Spina Bifida and Hydrocephalus.
