IF Working Group on Ageing with SBH: Reflecting and looking ahead 

As the year comes to an end, we take the opportunity to reflect on our various achievements and the exciting activities that the IF Working Group on Ageing with SBH carried out during 2025. 

These undertakings enabled us to unite in working toward our shared objective of improving the public’s understanding of the lived experience of ageing persons with SBH and advocating for important issues that impact our growing population to help bring about much needed and crucial changes for our community at a global scale. 

While advances in medical science in recent decades have increased life expectancy for people with these conditions, society has not adequately kept up with these changes by supporting our continued needs as we age, which only leads to poor health outcomes, increased hospitalisations, and a lack of structured care. To help combat this problem, members of the IF Working Group on Ageing came together to share our inspiring and powerful voices to advocate for a multitude of important issues, including the need to accelerate action to address healthcare disparities that impact the health and well-being of the growing ageing SBH community, to fight for fundamental human rights that empower our community, and to share our lived experiences so that the world can better understand what we need to continue thriving at all stages of life. 

The following meaningful activities helped shape our work and our community throughout 2025: 

• Organised the IF Webinar ‘Living with Spina Bifida and Hydrocephalus: Our Lives, Our Choices’
  On the International Day of Older Persons, the IF Working Group on Ageing held a webinar advocating for the fundamental human right of personal autonomy for the global SBH community, allowing these individuals to shape their own futures and experience the positive impacts that come with it, such as empowerment and achieving independence. Vanessa Caraveo (Chairwoman of the IF Working Group on Ageing) moderated the event and welcomed IF’s international audience, who joined the special celebration. Speakers from both the IF Working Group on Ageing and IF International Youth Group SBH, which included Gerry Maguire (Vice-Chair of the IF Working Group on Ageing) and Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia), shared their inspiring stories and journeys to achieving independence. The event demonstrated the power of connection, shared experiences, and perseverance across generations of people living with SBH.
• Joined the World Spina Bifida and Hydrocephalus Day
  On 25 October, the WSBHD main conference webinar brought together advocates, professionals, and policymakers to reflect on progress and discuss practical steps to accelerate action from improving healthcare and accessibility to strengthening rights-based policies. Vanessa Caraveo (Chairwoman of the IF Working Group on Ageing) represented the IF Working Group on Ageing as a speaker at the World Spina Bifida and Hydrocephalus Day’s main webinar. Vanessa highlighted the need to accelerate action to address healthcare disparities that impact the health and well-being of the growing ageing SBH community. She shared a vision for the future to better support this community and addressed the importance of advocacy in bringing about positive change around the globe.
• Joined the IF Inclusive Employment Webinar
  As part of the World Spina Bifida and Hydrocephalus Awareness Month, IF hosted a webinar named ‘Inclusive Employment and Skills for Life’. The webinar brought together voices from the SBH community, as well as advocates and experts working on inclusive employment policies. Stijn Calders (Spina Bifida Hydrocephalus Belgium) assisted in organising this event, and Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia) was a speaker who shared about employment barriers and proposed strategies for meeting the needs of the SBH community when it comes to creating supportive environments in the workplace. 
• Joined the International Women’s Day
  The IF organised the International Women’s Day ‘Accelerate Action’ webinar, where the theme focused on advancing accessibility, women’s empowerment, inclusive education, independent living, protection and safety during conflict and crisis, and gender equality. Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia) explored how to accelerate action on inclusive education and identified several key issues that need to be addressed to eliminate barriers women face in obtaining inclusive and accessible education on a global scale. Participants of the International Women’s Day Webinar emphasised that as a society, there is a need to accelerate action to ensure that no women are left behind.
• Joined the International Youth Day
  Vanessa Caraveo (Chairwoman of the IF Working Group on Ageing) and Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia) were speakers for the IF International Youth Group SBH webinar under the theme ‘Dreaming Beyond Barriers,’ which brought together young people with disabilities and youth activists from across the globe to share their dreams, discuss the challenges they encounter, and explore ways to advocate for a more inclusive future. Along with youth speakers, Vanessa and Xiao Vin shared their inspiring stories about how they were able to overcome challenges they faced as persons living with Spina Bifida. Through their personal stories, participants highlighted resilience, the importance of support networks, and the need for inclusive opportunities.
• Organised a Meet & Greet gathering: IF Working Group on Ageing & IF Youth Group with SBH
  IF established a way older generations with Spina Bifida and Hydrocephalus could mentor younger generations and offer helpful advice on living with these conditions. Thus, the Meet and Greet for both the IF Working Group on Ageing and IF International Youth Group SBH was organised for members of both groups to come together and share their lived experiences. It was a successful meeting for members of both groups, where topics ranging from personal life and employment to independence were discussed and advice was shared. Participants left with the understanding that people with SBH often face similar challenges, which is why opportunities to connect and learn from one another are so valuable.

Looking ahead 

The IF Working Group on Ageing with SBH remains committed to highlighting and addressing the lived experiences and unmet needs of older persons with Spina Bifida and Hydrocephalus through a proactive approach that includes advocating for the rights of our growing community, organizing meetings and events to connect with our global SBH community, publishing reports on best practices, and producing statements with recommendations for policymakers and service providers.

Looking ahead to 2026, we aim to continue raising awareness and advocating about the many important issues that are close to our hearts and align with our collective mission and values. Additionally, we plan to continue building connections by creating more opportunities for members to meet and share experiences and support. We are optimistic that by working together, we can bring about these much-needed positive changes for those ageing with SBH, as well as future generations to come so that people living with Spina Bifida and Hydrocephalus can receive the high-quality and inclusive healthcare and support they need throughout all stages of life. 

As we plan our work for 2026, we invite new members to join us in advancing inclusive care, sharing experiences, and contributing to meaningful change. Those interested can contact the IF Secretariat at [email protected]

The deadline to apply is 31 December 2025.

With gratitude,

Vanessa Caraveo

Chairwoman
IF Working Group on Ageing with SBH