IF International Youth Group SBH: Reflecting and looking ahead 

Slowly but surely we are ending the year 2025 and what a year it has been for the IF International Youth Group SBH. It was a year filled with interesting meetings and opportunities but also with a lot of change. 

In 2025, the Group met four times to define strategic priorities. At our first meeting of the year we reviewed our activities of 2024. Revisiting these activities gave us a lot of motivation for the upcoming year. By the second meeting of 2025 there were a lot of changes in our youth group (YG). We welcomed new members in – Gabriel Barba (Spina Bifida Support Group Foundation, Philippines), Narresh Vijayandran (SIBIAM, Malaysia), Viktoria Peykova (Spina Bifida and Hydrocephalus Association, Bulgaria) and Maahi Rudawat (Spina Bifida Foundation, India). The group elected Maahi Rudawat and Jurn Anthonis as Co-Chairs. Following the summer break, the Group met again to advance the preparations for October’s World Spina Bifida & Hydrocephalus Awareness Month and the respective events. In November, Youth Group members gathered to review the year’s challenges and accomplishments and to establish the groundwork for the group’s 2026 activities.

This year has been a powerful reminder of the importance of youth leadership and global solidarity among young people living with Spina Bifida and/or Hydrocephalus (SBH). As the Youth Group, we dedicated our efforts to understanding and amplifying the voices of our community especially around mental health, identity, and disability acceptance.

Our priorities guided the way we marked two important occasions: International Youth Day and World Spina Bifida and Hydrocephalus Day.

International Youth Day: Dreaming Beyond Barriers

For International Youth Day, we united under the global theme of ‘Dreaming Beyond Barriers’.

Our YG explored what it truly means to belong, to express ourselves, and to be recognised in every space – educational, social, and healthcare.

Through a series of discussions and interactions with youth across regions, mental health emerged as our strongest theme. We discovered that:

• Disability acceptance remains the most urgent priority for young people with SBH;
• Many youth struggle silently with mental health concerns due to stigma, inaccessible systems, and lack of emotional support;
• Opportunities for intergenerational learning and mentorship significantly improve confidence and self-worth.

During the webinar together we had honest conversations about self-acceptance, bullying, social isolation, identity, and the emotional realities of growing up with SBH nowadays.

Our message for International Youth Day was clear:

“Youth with SBH are not just participants; we are leaders. We shape our narrative and define our future.”

World Spina Bifida & Hydrocephalus Day: Strength, Visibility, and Global Advocacy

After the International Youth Day we started preparing for the most important month of the year: October World Spina Bifida & Hydrocephalus Awareness Month. To start it off, the Group participated, through Maahi Rudawat and Jurn Anthonis as main speakers, to the webinar for the International Day of Older Persons organized by the IF Ageing Group on the 1st of October. During the webinar there were two discussion roundtables: one with older people with Spina Bifida and one with youth with Spina Bifida. It was very inspirational to witness how both Groups experience living with Spina Bifida and how they tackle the obstacles in life.

Also in October, we held our annual Meet & Greet with the IF Group on Ageing with SBH. During this meeting members of the Group could ask questions about living with Spina Bifida and Hydrocephalus to persons who have much more experience. There was also time for older people with SBH to ask questions to the young people. It was a wonderful exchange on life choices, mental health, physical conditions and much more. Nice things can happen when generations come together!

As we moved toward World Spina Bifida and Hydrocephalus Day 2025 (#WSBHD25) on 25 October, our focus shifted to global awareness and empowerment. This day was not only a recognition of our condition; it was a reminder of our resilience, our diversity, and our unwavering determination to be seen.

This year, our theme centered on accelerating action for more visibility, mental well- being, and lived experience. We aimed to highlight:

• The importance of accessible healthcare and supported decision-making;
• Equal representation of youth with SBH in policy and community leadership;
• The everyday challenges young people with SBH face- from mobility to sexuality, education to family planning;
• The strength we draw from sharing our lived experiences.

We prepared a meaningful advocacy campaign that included youth voices, personal stories, and a collective call for societal acceptance and inclusion. Youth from around the world were invited to contribute, collaborate, and amplify the message that SBH is not a barrier to leadership, it is a story of overcoming and evolving.

A Unified Call to Action

Both International Youth Day and World Spina Bifida and Hydrocephalus Day 2025 reminded us of our shared mission: To build communities where young people living with SBH feel valued, understood, and empowered.

We stand together in our commitment to mental health, disability acceptance, and meaningful youth participation. We invite every young person to join us!

We have opened a call for new members of the IF International Youth Group SBH in 2026! If you are interested, please write to us at [email protected] by December 31st 2025! 

Share your experiences, raise your voice, and help shape the global perspective on SBH. 

Together, we are stronger. Together, we redefine possibility.

Warm regards,

Maahi Rudawat & Jurn Anthonis

Co- Chairs
IF International Youth Group SBH
[email protected]