Note from the National Executive Officer

Ride for kids, Vinnie, Rachel, Danny and Lesley Harrison

Leave no-one behind

By Zandra Vacarino - National Executive Officer

Kia ora

The 21st March is an important date in the global Down syndrome community as we all unite with one voice to celebrate World Down Syndrome Day (WDSD). WDSD is also an opportunity to generate awareness, to change perceptions, to share key messages and to advocate for actions that will bring about change so that all people with Down syndrome can access and enjoy full citizenship rights. I am sure that the 2019 theme, “Leave no one behind”, is a message that will resonate with self-advocates, families/whānau and supporters in New Zealand and that they will actively promote and support the call to action. The theme “Leave no one behind” is not just something to highlight on World Down Syndrome Day but rather a challenge to each of us to do something in 2019 that will ensure that we have contributed to the movement and “Leave no one behind”. I have decided that in the national systemic advocacy work that I do that I will be looking and considering whether systems or policies facilitate or block the goal to “Leave no one behind”. On a more personal note when supporting our son Vincenzo I will be asking myself, “will this help to ensure that Vincenzo is not left behind?” Please email me on neo@nzdsa.org.nz to let me know what you have done to be a change agent. World Down Syndrome Day (WDSD) events take time and a team of people to organise, so on behalf of the NZDSA I would like to express my sincere thanks to everyone who attended, hosted and supported WDSD celebrations. If you would like to see how this event was celebrated around the globe then view World Down Syndrome Day on the Down Syndrome International website: https://www.worlddownsyndromeday2.org/ Share your “What Makes Me Proud” stories Down Syndrome Australia has decided that for World Down Syndrome Day they would tackle lack of understanding about Down syndrome in their community with a “What Makes Me Proud?” campaign.

Stephanie at Ride For Kids

They are asking people with Down syndrome to consider the question and write stories about, “What Makes Me Proud?” I want to invite self-advocates or a family member to submit “What Makes Me Proud?” stories and we will share your submissions in CHAT21, Ēnews and possibly our website.

Youth Development Camp invitation The NZDSA is again hosting the Youth Development Camp from the 1st to the 3rd November 2019 at Vaughan Park Retreat Centre, Long Bay, Auckland. We would like to offer all NZDSA youth members (18 plus) the opportunity to apply to their regional group to be nominated to attend this event. If you are interested, please register your interest by emailing neo@nzdsa. org.nz before May 1.

Rose Award The Rose Award provides the opportunity to acknowledge and thank individuals or organisations who either support individuals with Down syndrome or the wider Down syndrome community, so I want to encourage you all to nominate the great people in your community.. This quarter I have decided that I will nominate all the instructors at Sir Peter Blake Marine Education and Recreation Centre (MERC) for the Rose Award. The NZDSA hosts Youth Development Camps each year at the MERC where the youngsters participate in Outdoor Activities which include Archery, Abseiling and Rock Climbing. These activities are challenging and more daunting for some than others, however with the support and encouragement of the instructors, all the participants are able to participate and accomplish their personal goals. Please take a moment to think about someone in your community who deserves to be acknowledged with a Rose Award and email Linda at nzdsai@xtra. co.nz.

Celebrations and congratulations The team at National Office had the opportunity to celebrate a wedding in December when Dan te Kaat, who is the designer of CHAT 21, got married to his beautiful Rose. Rose and Dan are regular support buddies at the Youth Development Camps. I am sure you will join the NZDSA National Committee and staff in congratulating Dan and Rose on their marriage.

Wedding that changes perceptions You will have read in Down Write Brilliant that our son Vincenzo got married to his sweetheart Rachel on January 12. They started dating seven years ago and at the time we thought it would just be a short-lived romance but we were wrong, and after a couple of years they started to share with us that one day they wanted to get engaged and then get married. They got engaged on 28 March 2017 and the wedding day was an incredible day filled with celebrations with family and friends. The venue had to limit numbers so we decided to have a blessing on the 19th January 2019 in Palmerston North for friends who couldn’t attend the wedding. At times during the wedding day and blessing I reflected on my thoughts when I was first told our beautiful baby son had Down syndrome. Like most parents we wondered what the future would hold for Vincenzo and we decided that we would commit to providing him with every opportunity to live a fully inclusive life and to support him to achieve the life he wanted. We had many goals for Vincenzo, but getting married wasn’t a dream that we had considered so it was surreal to see our son waiting for his bride to walk down the aisle and to hear him saying the vows he had written. I am so thankful that Vincenzo’s goals are bigger than mine. Their wedding is a demonstration of Vincenzo and Rachel’s determination to achieve their goals for their own lives. For the parents and siblings it is a privilege to be sharing this new part of the journey alongside Vincenzo and Rachel as we support them to continue to shape their marriage and future life. I must add that I have found it interesting that