National Executive Officer

Kia Ora

I hope that you have had a wonderful start to 2018. I have had the privilege of working with so many inspiring people this quarter as well as working on a number of different events and projects. In January the key calendar events Ride for the Kids 2018 held in the Manawatū, and a trip to New Plymouth to meet with Dr Surekha Ramachandran, President of the Down Syndrome Federation of India. February was another busy month with STRIVE and Self-Advocacy Workshops hosted in Auckland, the filming and editing of "Dear Health Professionals" and the NZDSA National Committee Meeting in Christchurch. The primary focus in March of course was preparing and celebrating World Down Syndrome Day and an NZDSA team meeting in Christchurch. The month of February included the news that our long-standing editor, Jessica Harkins, had made the very difficult decision that it was time to resign from her role so that she can pursue other interests. I am sure that you will join me in thanking Jess for all her contributions to CHAT 21 and the NZDSA and we wish her every success in the future. We know that whatever she does she will continue to be a strong advocate for people with Down Syndrome. Thanks again Jess for all your contributions to the Down syndrome community. I am sure that you noted that this edition of CHAT 21 was produced by guest editor Coen Lammers. Thank you Coen for creating this edition of CHAT 21 which includes a number of contributions about World Down Syndrome Day celebrations. In keeping with this theme, I have selected a few related events to report on below.

International Visit The NZDSA is a member of the Asia Pacific Down syndrome Federation (APDSF) and while it isn’t always possible to attend all the APDSF meetings we do contribute and engage with countries in this region. This year my first work commitment was a meeting in New Plymouth with Dr Surekha Ramachandran, President of the Down Syndrome Federation of India and valued member of APDSF.

This meeting was an opportunity for us to collaborate and learn from each other as we shared ideas on what we do, how we support people with Down syndrome and their families, our aspirations, our challenges, our advocacy role and how we can work together in this region to empower people with Down syndrome to realise their potential and aspirations. Dr Surekha Ramachandran spoke at the General Assembly of the United Nations on March 19 and included the following statements and said that “many countries today are looking towards genetic culling to terminate pregnancies which show any genetic anomalies.” and “This devaluation of life to cleanse the world of anyone who may have a disability is something the human rights-respecting world should not approve and should therefore condemn in the most appropriate manner possible”. She urged the United Nations Human Rights Commission to “step in to support and respect the lives of people with Down syndrome and help spread awareness towards promoting the human rights of people with Down syndrome”.

World Down Syndrome Day 2018 How did you celebrate World Down Syndrome Day? I celebrated the event with the Manawatū Down syndrome community and supporters at the launch of the “Dear Health Professionals” video. The screening was a wonderful opportunity to focus on “What I bring To My Community” - the global theme for WDSD 2018. These were a few things that we shared that people with Down syndrome bring to their community • Friendship • Courage to face challenges • Cooking great meals • Role models • Loyalty • Acceptance • Patience • Work ethic • Honesty • Joy • Kindness • Teamwork

I would invite you to send in your stories of “What I bring to my community”. Don’t forget to include your photograph so that we can publish your contributions in the next edition of CHAT 21.

I would like to express my sincere thanks to everyone who hosted and supported WDSD celebrations

This edition of CHAT 21 highlights a few of the wonderful celebrations hosted in New Zealand and 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 worlddownsyndromeday.org/ You will be able to view the WDSD conference at www.un.org/en/events/downsyndromeday/ or worlddownsyndromeday.org/wdsd-conference

Dear Health Professionals Did you view and share the NZDSA's latest resource “Dear Health Professionals”? A few years ago the STRIVE leadership group developed a declaration regarding Health which they wanted to share with health Professionals. So we decide to combine their key messages with the 2018 global WDSD theme #What I Bring To My Community. The script was developed by combining key messages from STRIVE and the personal stories of 14 self-advocates. All the footage for the video clip was filmed on the 2nd of February 2018 in Auckland. I think you will join me in congratulating the talented stars featured in the video clip. A special thanks to the crew from Borderless Productions who helped the NZDSA produce this resource. The purpose of producing this video is: • to promote greater awareness about Down syndrome • to create the opportunity for people with Down syndrome to speak up and share an advocacy message with Health Professionals. • to challenge Health Professionals to join them in sharing what they bring to the community. We hope that you will share this video clip within your community.

General reminders Request – please would you forward your email address to National Office. The NZDSA office receives numerous notices, training opportunities or special events that you might be interested in but they often have short response times so we need to forward information to you promptly. Unfortunately, the cost of postage prevents us from posting regular updates but we do send out e-news updates. We only have a small percentage of email addresses so if we don’t have your email address, please would you forward it to me at neo@nzdsa.org.nz or Linda at nzdsai@xtra. co.nz.

Rose Award This quarter I have nominated Roseanne Boddy, EASIE LIVING CENTRE CO-ORDINATOR, Enable New Zealand for hosting the NZDSA WDSD celebrations. These awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email me neo@nzdsa.org.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”.

I will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

How you can support the NZDSA We believe that you can assist us in extending our core services as you may know of individuals or businesses who would like to support the work of the NZDSA by considering partnering with us to not only provide our ongoing core services to the community, but also to realise our vision to address even more community needs and to implement projects which will enable people with Down syndrome to be fully included in their community. These individuals might consider providing either service support, resource support, product support or even financial support. Financial support might be in the form of assisting with fundraising, considering a workplace giving scheme or sponsoring the NZDSA. If you can help us in this area please would you contact me on 0800 693 724 press 1 or national. coordinator@nzdsa.org.nz

Share your stories I would like to invite all our members to forward their stories and photographs so that the NZDSA can feature your story or photograph in CHAT 21.