09 March 2023

Leader of Down Syndrome Association shares journey

As the celebrations for World Down Syndrome Day (WDSD) fast approach, Parent to Parent asked Zandra Vaccarino—National Executive Officer of the New Zealand Down Syndrome Association (NZDSA)—to tell us about her nearly three-decade-long involvement in the Down syndrome community, what the day means to her, her hopes for the future, and how she finds hope when times get tough.

When did you join the NZDSA? What did you do before joining?

When we arrived in New Zealand from South Africa in 2003, I immediately missed my involvement in the Down syndrome community, which started when I phoned the Gauteng Down Syndrome Association support line when my son was two weeks old.  

So, the first thing I did was identify parent groups in my new community here in Aotearoa. Firstly, I served on the Parent to Parent Manawatū committee, and a few months later I joined the local Manawatū Down Syndrome Committee. In 2004, I was employed as the NZDSA national coordinator.  

Little did I know at the time that my initial involvement with the Down syndrome community would still be going strong 28 years later, from one side of the world to the other!   

Tell us a little about your family.

A photograph tells a thousand words. These are the people in New Zealand that are dearest to my heart.  

Zandra and her whānau at the wedding of her son, Vincenzo.

Zandra and her whānau at the wedding of her son, Vincenzo. Photo courtesy of Zandra Vaccarino.

What’s been the most fulfilling part of your work at the NZDSA?  

I believe that I have the best job in the world! I get to meet so many wonderful people who are always teaching me new things, so I am always learning and growing.    

The NZDSA provides a constantly evolving work environment which means I never get bored, but it can be challenging. While it’s frustrating that we don’t have the resources to provide much-needed individual advocacy, I have the privilege to be involved in lots of exciting projects where ongoing, systemic advocacy results in changes to policies and practices that benefit all disabled people and their whānau. 

When a person who has reached out for support provides you with feedback on how it changed the situation, it’s incredibly rewarding. I think the best part of working for the NZDSA is hearing these stories of transformation for disabled people and their whānau and the opportunity to collaborate with other like-minded organisations. 

What does World Down Syndrome Day (WDSD) mean to you? 


The 21st of March is one of my favourite days in our annual calendar as WDSD is when our community gathers to celebrate people with Down syndrome. Often it includes the NZDSA National Achievement Awards, which recognise the achievements and contributions of people with Down syndrome.  

It is a joyful, fun, empowering, and creative day as members of the Down syndrome community and our supporters come together across New Zealand, either face-to-face at a variety of creative events or online at the annual ‘Big Connect’ to mark WDSD. We would love you to join us, just head to our Facebook page for details. 

WDSD is a great opportunity to promote greater awareness of Down syndrome. The theme for this year is “With Us Not For Us“.

Tell us about some current NZDSA projects you are excited about.  

I am so excited that 2023 will see the return of events that will bring our members across New Zealand together again. COVID-19 has impacted significantly on our community and the NZDSA stopped all face-to-face events to keep our community safe. While we have valued the use of online gatherings, we have missed the vibrancy of connecting with parents, whānau, people with Down syndrome, and our friends in the disability sector.   

An exciting new initiative for 2023 will be meeting with regional communities to talk about Enabling Good Lives. This will offer opportunities for reconnection, to listen and learn from our resilient community—which has faced so many challenges through COVID-19 and the recent devasting weather events—and explore together how we can build the capacity and capability of our community.   

I am also excited that 2023 will provide opportunities for greater collaboration between the NZDSA and Parent to Parent as we strive to serve our communities—watch this space!      

Finally, I am keen to explore the 2023 WDSD theme “With Us Not For Us”: to ask people with Down syndrome what it means to them, and how we, as an organisation, can implement strategies in response.  

What are your hopes for the future? 

I hope to live in a fully inclusive society where everyone enjoys full citizenship rights. I dream of the day when the NZDSA has to create a new vision, as we will have realised our current one: That people with Down syndrome are respected, valued and equal members of the community fulfilling their potential and aspirations.   

How do you find hope in challenging circumstances? 

I think people with lived experiences of disability face more challenges than the general population, so we become fairly resilient, having learned how to find hope through difficult times. I also think the kindness, wisdom and support we receive from our whānau, friends and community sustain us through these times.  

Through personal experience, I have found parent and whānau support groupslike the NZDSA, Parent to Parent, and other groupsinvaluable in times of challenge, as they connect you to others who understand your circumstances and can provide not just hope, but guidance, support and often practical solutions. The challenges can then be managed and even overcome.  

Do you have a go-to family activity or phrase for when things get tough? 

My family tease me because my response is to make a cup of tea. Sharing a hot drink is an opportunity to stop, breathe, talk, listen, and then support one another and usually, the kōrero leads to solutions.   

For a season, High School Musical was played on repeat in our home so the phrase ‘We’re all in this Together’ has become a catchphrase in our home and it is the way we navigate the tough times.    

I don’t think this view is unique to our family as the recent weather events have demonstrated that so many New Zealanders have responded to the devastation by doing what they can to help others.   

It is International Day of Happiness on the 20th of March, the day before WDSD, so in three words, what makes you happy?  

Can I cheat and use four? The 4 Fs: Family/Whānau, Food, Fun and FRED (which stands for ‘Freedom, Respect, Equality and Dignity’ for everyone).  

That’s actually eight Zandra – but we’ll let you off 😉 
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