Event location: Missionvale Campus
Event date and time: 21/03/2025 10:11:41
Nelson Mandela University’s Faculty of Science and Faculty of Health Sciences, in collaboration with the South African Agency for Science and Technology Advancement (SAASTA), hosted a World Down Syndrome Day event at the university’s Missionvale Campus.
Nelson Mandela University and SAASTA Advocate for Inclusive Communities on World Down Syndrome Day
Under the theme “Building Inclusive Communities that Advance Support for People with Down Syndrome,” the gathering brought together academics, medical experts, parents, and community members to foster discussions on inclusion, support, and advocacy for individuals with Down syndrome.
Welcoming and Keynote Address
Prof Zenixole Tshentu, Acting Dean of the Faculty of Science.
Prof. Zenixole Tshentu, Acting Dean of the Faculty of Science, officially welcomed attendees, acknowledging all stakeholders present. Including representatives from SAASTA, community leaders, and medical professionals. He emphasized the importance of fostering an inclusive society where scientific and health advancements contribute to the well-being of individuals with Down syndrome. Prof. Tshentu explained that while World Down Syndrome Day is typically observed on March 21, the university chose an alternative date to ensure meaningful engagement without conflicting with Human Rights Day. He underscored the university’s commitment to using scientific research and community engagement to promote awareness and support for individuals with Down syndrome. Highlighting the role of academia in shaping a more inclusive society, he encouraged collaboration between institutions, healthcare professionals, and families. “As a university, we recognize our responsibility to engage with and uplift communities,” he stated.
Prof. Tshentu acknowledged key individuals and groups who contributed to the event, including:
Prof Siyazi Mda, Programme Director
(Programme Director) Prof. Siyazi Mda, (Missionvale Campus Senior Director) Ms. Sharon Masiza and Dr. Morar Reno (Director of the Medical School).
Ms Sharon Masiza, Missionvale Campus Senior Director
Dr Morar Reno, Director of the Medical School.
He also recognized Dr. Chris Ajonijebu from the Human Physiology Department, clinicians from Dora Nginza Hospital, staff from the Biokinetics Unit at Missionvale, and representatives from NGOs such as the Port Elizabeth Down Syndrome Association (PEDSA), Early Inspirations, Missionvale Care Centre, Indlela Mental Health (Cotswold), and Ithemba Special Day Care Centre (Windvogel). He further thanked the colleagues from the Accessibility and Disability Unit, SAASTA Representatives including Simon Rametse, panel respondents Prof. Siyazi Mda, open engagement session facilitator Dr. Bruce Damons, and members of the organizing committee. Special mention was also made of Dolly Ntintili and Achumile Poni (from Prof. Tshentu’s office) and Sherwin King (from Dr. Morar’s office) for their support.
Concluding his address, he turned to keynote speaker Dr. Nomlindo Makubalo and remarked in isiXhosa: “Sizova kuwe xa usihlohla lomxholo wanamhlanje.” (We will listen to you as you unpack today's theme.)
SAASTA NRF: Promoting Scientific Literacy and Community Engagement
Mr Simon Rametse, SAASTA (NRF) representative.
Following Prof. Tshentu’s welcome address, Simon Rametse, a representative from the South African Agency for Science and Technology Advancement (SAASTA), provided an insightful overview of SAASTA’s mission and its role in advancing scientific knowledge within communities.
SAASTA, a division of the National Research Foundation (NRF), is dedicated to promoting science, engineering, and technology in South Africa. Its core mandate is to enhance public engagement with science by bridging the gap between researchers and communities. Through various outreach programs, exhibitions, and collaborations with academic institutions, SAASTA fosters scientific literacy and encourages young people to pursue careers in STEM (Science, Technology, Engineering, and Mathematics).
Mr Rametse emphasized that SAASTA’s work extends beyond traditional scientific communication—it also involves creating inclusive platforms where science meets social responsibility. He highlighted the agency’s collaboration with Nelson Mandela University, particularly in promoting awareness about genetic health conditions such as Down Syndrome. “Science should serve society, and part of our responsibility is ensuring that communities are informed, engaged, and empowered through knowledge,” he stated.
His address reinforced the importance of merging science with community-driven initiatives, ensuring that research and education directly benefit the people they are meant to serve.
Keynote Address by Dr. Nomlindo Makubalo
Dr. Nomlindo Makubalo, Dora Nginza Hospital Representative.
Dr. Nomlindo Makubalo, a pediatrician and community health specialist at Dora Nginza Hospital, delivered an insightful keynote address emphasizing the significance of early intervention, inclusive education, and societal acceptance for individuals with Down Syndrome.
World Down Syndrome Day Background
Dr. Makubalo provided a historical overview, explaining that the United Nations established World Down Syndrome Day in 2012 to raise awareness, promote inclusion, and celebrate the achievements of individuals with Down Syndrome. The date (March 21) was chosen to reflect the chromosomal condition—having three copies of chromosome 21 instead of the typical two.
Philosophical Approach
Using a creative bread-making analogy, she illustrated how chromosomal differences do not define an individual’s worth or potential. She stressed that an extra chromosome does not diminish a person's abilities but rather presents a unique journey that, with the right support, allows individuals to thrive. “It’s just an extra chromosome; we are not different,” she remarked, reinforcing the message of equality and inclusion.
Annual Theme Progression (2018-2024)
Dr. Makubalo traced the evolution of World Down Syndrome Day themes over recent years, showcasing how advocacy has progressed:
• 2018: Workplace Inclusion – Demonstrating professional capabilities
• 2019: “Leave No One Behind” – Ensuring comprehensive societal support
• 2020: Self-Determination – Empowering individuals to make choices
• 2021: Connectivity – Linking with technology, NGOs, and support systems
• 2022: Understanding True Inclusion – Focusing on educational integration
• 2023 – With Us Not For Use – Advocating for autonomy and self -representation
• 2024 – End the Stereotypes – Challenging misconceptions and promoting accurate awareness.
Key Advocacy Points
She emphasized that every developmental milestone for individuals with Down Syndrome deserves celebration, as each achievement signifies progress. She also reinforced that rights for people with disabilities are enshrined in the South African Bill of Rights and called for more medical support, including addressing heart abnormalities and providing specialized therapies. Her message was clear: inclusion is not about tolerance but about recognizing the inherent value and potential of every individual.
Panel Discussion: Sharing Experiences and Challenges
Panel Discussion, Missionvale Campus
A key segment of the event was a panel discussion facilitated by Dr. Bruce Damons, which provided an opportunity for parents and attendees to share their lived experiences of raising children with Down syndrome. The discussion centered on the joys, challenges, and needs of families, offering a deeper understanding of the ecosystem of care.
One parent highlighted the unconditional love she receives from her child, Bathandwa, saying he is always the first to comfort her when she is in distress. Another parent noted that many children with Down syndrome are naturally friendly and musically inclined. The conversation revealed common themes such as emotional and financial support, fear of the unknown, lack of awareness, health support, and the need for greater safety measures. Panelists emphasized the importance of addressing these challenges to ensure a nurturing and inclusive environment for individuals with Down syndrome.
Rethinking University-Community Engagement
Dr Bruce Damons, Panel Facilitator
As the panel discussion concluded, Dr. Bruce Damons shifted the focus to a thought-provoking question: How can universities better serve their communities beyond financial support? He urged attendees to reflect on what institutions can do to strengthen community engagement and improve the lives of individuals with Down syndrome.
The discussion underscored the importance of shifting the narrative from academic literacy to community literacy—where knowledge is shared through lived experiences and emotional connections. One proposal included reviving hospital food gardens to support mothers caring for children with Down syndrome, ensuring they have access to fresh produce when leaving healthcare facilities. Additionally, calls were made for increased research initiatives to inform policy advocacy and improve healthcare services.
Commitment to Continued Advocacy
The event reinforced Nelson Mandela University’s commitment to fostering inclusive communities and advocating for the rights of individuals with Down syndrome. Moving forward, the university, alongside SAASTA and other stakeholders, aims to strengthen collaborations with NGOs, researchers, and policymakers to enhance support systems for affected families.
With engaging discussions, shared personal stories, and thought-provoking debates, the event successfully highlighted the collective responsibility needed to create a society where individuals with Down syndrome can thrive without discrimination.
Dr. Tshabalala Zithulele, the Head of Department of Human Biology and Integrative Pathology, gave the vote of thanks at the event on behalf of Prof. Valena Dan Rooyen (Acting Dean, Faculty of Health Sciences).
– Written by Achumile Poni.