Ben Everett: President / Joint Youth & Family Officer.Hi, I’m Ben and I’m proud to serve as President of TSANZ. My connection to Turner Syndrome is through our 10-year-old daughter Madison, who is a TS Butterfly Warrior. My beautiful wife Elli and I know first-hand how Turner Syndrome can touch your life, and how uncertain and isolating the journey can feel without trusted information and a strong community around you. When I first became involved with TSANZ, membership had dropped to just over 10 members. A small group of people had worked hard to keep the association going, and I had a lot of respect for that. It made me think about what TSANZ needed for the future, and that has shaped my focus as President ever since. For me, it comes back to building a strong and sustainable community that people know they can turn to for support, connection, trusted information and advocacy. My hope is that Madison grows up knowing that our differences are part of what make us special, and that strong communities help people feel supported, confident and connected throughout their lives. A little bit about me, I’m a husband, a father of three amazing girls and proud to call Te Awamutu in the mighty Waikato home. I feel pretty fortunate to spend my time doing things that matter to me, both through TSANZ and in my work with Petfirst Veterinary, where I support veterinary teams to care for Pet Parents and their pets in a way that strengthens the human animal bond. Outside work and TSANZ, the things I value most are pretty simple. Time with family, travel, cooking and a good long lunch. I’m proud to be part of this community and I’m looking forward to continuing my journey with TSANZ, helping to grow, connect and support our members across Aotearoa.
Our Committee 2026 - 2027
Kate Beaumont-Smith: Treasurer / Grants Officer / Joint Youth & Family Officer. Hi, I’m Kate, and I’m mum to Holly, who was diagnosed with Turner Syndrome while I was pregnant. Holly has mosaic Turner Syndrome with a mix of 45 X and 47 XXX. Holly is now seven and thriving. She loves sport and has just won Most Improved Player after her first season of tackle rugby —something she is incredibly proud of. She also plays netball, rides her motorbike, enjoys watching football and loves building Lego. We live in Hinds, near Ashburton in the South Island, where we are dairy farming. Having the diagnosis in utero meant Turner Syndrome became part of our family’s story before Holly was even born. Like many families, we have experienced a mixture of appointments, questions, worries, and celebrations along the way — but, above all, Holly is simply Holly: a bright, determined and much-loved girl who keeps us all on our toes! Being involved with the Turner Syndrome Association of New Zealand has given our family the opportunity to connect with others who genuinely understand the journey. I’m passionate about supporting families, sharing experiences and helping build a welcoming community where our girls and women feel understood, celebrated and proud of who they are. I am really looking forward to the Youth and Family Camp to be held in Christchurch in April 2027. We are just sorting funding behind the scenes but looking to announce more details shortly.
Julie Williams: Community Officer. My name is Julie Williams and I have been married to Owen for 29 years. I was diagnosed with Turner Syndrome when I was 18 years old. I got involved with the Wellington Turner Syndrome group when I was in my mid 20's, and then the New Zealand group when the Wellington group combined with the New Zealand group. I have been on the committee for many years in various roles. It has enabled me to meet women and girls with Turner Syndrome and to support members. I think it is important for women, girls, and families to have support and resources.
Eleanor Everett: Vice President.Hi, I’m Elli, and I’m proud to serve as Vice President of TSANZ. I’m a mum to three little ladies, aged 10, 8 and 7, and I work full time as a paramedic in the Waikato. My role as Vice President is about supporting the President, our Committee and the wider TSANZ community wherever I can. My connection to Turner Syndrome is through our eldest daughter, Madison, who was diagnosed in utero at 11 weeks whilst we were living in London. From that moment, I wanted to learn everything I could about Turner Syndrome and understand how we could best support her throughout her journey. In those early days, I spent a lot of time researching while Ben connected with Arlene from TSSG UK. We were also fortunate to meet a nurse at UCL Hospital who shared her first-hand experience with us. Those early conversations reinforced just how important trusted information, support and connection can be for families navigating a Turner Syndrome diagnosis. Some of the most special moments for us have come through the wider Turner Syndrome community. Co-hosting both the NZ & Australia Conference in Wellington and, more recently, the International Conference in Brisbane gave us the opportunity to meet some incredible people. Watching Madison make friendships with other girls who also have Turner Syndrome has been especially meaningful because that is not something she gets to experience often in everyday life. That sense of belonging is a big part of why I became involved with TSANZ. I want to help create a safe, welcoming and inclusive community where girls and women with Turner Syndrome, and their families, feel supported, connected and never like they are facing their challenges alone. I really value the stories and experiences our members share, along with access to current medical guidance and information that helps families advocate confidently for their own little butterflies. Outside TSANZ, I enjoy playing netball, watching sport, travelling with my family and getting lost in a good book. I’m proud to be part of this community and look forward to helping TSANZ continue to grow, connect and support our members across Aotearoa.
Sue Maynard: Marketing and IT.Hi my name is Sue. I live in Invercargill, and am a Primary School teacher although nowadays I spend 3 days a week in a Curriculum Advisory role and 2 days teaching. I love reading, tramping, travelling and spending time with friends and family. I was diagnosed with Turner Syndrome in 1993 when I was 19. The only physical symptom that I had that led to a karotype being done was Primary amenorrhoea. I had no other physical symptoms of Turner Syndrome so that contributed to my relatively late diagnosis. At that time apart from being put on HRT, having a pelvic ultrasound, and checking bone density I had no other screening done for any other issues that can be associated with Turner Syndrome - not even referred to an Endocrinologist - which with what I know now that really wasn't the best of care. I remember finding the diagnosis really tough as I was away from home and family for the first time at University and felt very alone. I had always wanted children and found the infertility aspect of the diagnosis very hard to take. For years my Turner Syndrome was something that I never talked about and something I tried very hard (unsuccessfully I might add!) to ignore. It really affected my self esteem, my sense of self worth, and my identity as a woman. I just didn't want to talk about it - in fact when I tried to, it was literally like I physically couldn't open my mouth to begin that conversation, as the feelings it bought up were just so strong and overwhelming. It wasn't until I was in my 40's and seeing a counsellor that I opened up and started to heal the years of hurt that I had kept to myself - about my infertility, about the very negative body image feelings I had about myself, about the intense feelings of shame that I felt about having Turner Syndrome. The work of Brené Brown, American researcher and author whose work explores shame, vulnerability and self-worth, has helped me enormously on my journey towards self-acceptance and one thing she states is that “If you put shame in a Petri dish, it needs three things to grow exponentially: secrecy, silence and judgment." And over a period of 25 years I had given my diagnosis more than enough secrecy, silence, and judgement. And it was more than time to change that! With the help of a great therapist I learnt that I am more than my diagnosis, that my diagnosis doesn't make me any less of a woman, and that honestly life is far too short to spend another day at war with yourself! I spent a lot of time researching Turner Syndrome because as they say knowledge is power - I took control of my diagnosis instead of letting it control me. I went to my GP and showed her the list of all the screening tests that should have been done at the time of diagnosis and had all of them done and I make sure I keep up with all the screening as and when needed. Considering I ignored my diagnosis for so many years I was very fortunate that the screening showed no other physical conditions that can come with Turner Syndrome. Doing the research I did was honestly like a lightbulb going off in my brain - there were so many "Oh so that's why" moments. For example maths drove me to tears at school, I struggled to learn to drive, socially I find large groups very overwhelming and I can struggle to make conversation when meeting new people, reading maps and visualising things can be challenging as well, I can get very anxious and overthink situations a lot - reading how these can all be part of Turner Syndrome was fascinating and answered many questions from when I was growing up. My journey with Turner Syndrome, apart from infertility, has definitely been more about the social and emotional effects that can occur, as opposed to the physical. It was when I was looking into Turner Syndrome that I came across this Facebook page and that was in 2023 - the year that the Turner Syndrome Summit was being held in Wellington. I was challenged by my counsellor to go to this event which I did - and so it was exactly 30 years to the month after my diagnosis that I met people with Turner Syndrome for the first time - 30 years!! That was a turning point in my journey - to know that I was not alone, that there is a whole community out there, that there is support and companionship on our journeys was so very special. It took another 2 years before I became involved as a Committee member and my greatest wish through my Marketing role is to help further develop a strong community that offers support, encouragement, friendship, resources, and whatever else is needed. Having been to the 2023 Summit and the 2026 International Conference and met so many confident, strong, proud girls and women with Turner Syndrome it does make me reflect even more on my journey - and not with regret for the years I felt so alone - but with hope and joy in the knowledge that this wonderful community exists and is there for each and every one of us. So I encourage you all to interact with our wonderful community we have here - to ask questions on this page, to share tips and resources, or say hi and share your story with Turner Syndrome. If you’ve made it this far in this post, you’ve done well! 😂 In the words of George Bernard Shaw, “Life is not about finding yourself, it is about creating yourself” – and for me, that really sums up my journey with Turner Syndrome! My journey has never been about finding myself, but about creating the person I want to be. And today, I’m proud to say that I’ve grown into a strong, independent woman who embraces who she is and is living her best life with Turner Syndrome.
Sara-Jayne Morrow: Secretary.My name is Sara-Jayne and I'm honoured to be the new secretary for TSANZI. I grew up knowing I had Turner Syndrome, and learning bits and pieces about it over the years, but I never knew anyone else who had it, and I didn’t know about the TSANZI either. So I feel like I am making up for lost time by finally getting involved. I enjoy spending my time with various creative hobbies or projects (mostly digital). My latest project is making various artwork for the DND group I’m part of, and looking after its official Twitch and Youtube page. I’m also currently job hunting. My most recent role was for a non-profit for a short time as an admin, so I hope to bring some of that experience and use it to help support and grow the association. My hope is that more Turner girls and women in NZ will know about the association, so that they know there is an active, supportive community out there that knows first-hand what it’s like to live with Turner Syndrome.
Christine Flood: Membership Officer.Hi I’m Christine and I was diagnosed with Turner Syndrome when I was 16, in the late 80's, yes 80's. Back then, there was little understanding of Turner Syndrome and its impact upon women and girls. The clinical manner in which I was told was also rather devastating. I was a teenage girl at an age where you explore who you are, including boys, and I was thrown this curveball. To add to this, I have a common Turner Syndrome condition. I am hearing impaired, and deal with Tinnitus. This affected me, not with what I was able to learn, but how I learnt it. I found I am a visual person. At first, I was upset, angry with all this. But I brushed myself off. In my 20's I was referred to a lovely group of ladies who helped form the Wellington Turner Syndrome Group. It was really good for me to meet with other women who have this syndrome, to socialise and talk about it. And talk we did. We learnt a lot about Turner Syndrome in the years to follow - for example I am 5ft 4 which is tall for a woman with Turner Syndrome. Since then, I have remained involved with Turner Syndrome groups. First the Wellington group, and now the National group. I’ve worked in Banking, and in various Government Departments. To help with all this I wear aids, to better understand, and be understood. I also joined Toastmasters, which has helped my confidence considerably. I have gotten support when I needed it, and I want other women and girls with Turner Syndrome to know they can find it too.
Angela Wynn: Shadow TreasurerHi everyone! My name is Angela Wynn and I’m really excited to join TSANZI and to get more involved with this amazing community. I live in Auckland with my husband Matt, our two daughters Charlotte (16), who has Turner Syndrome, and Courtney (14), plus a dog and two cats who pretty much run the house. Last year we went to the Turner Syndrome International Conference. Meeting so many families, hearing everyone’s stories, and learning more about TS was a great experience for us. It really inspired me to step up and contribute more. A little bit about me: I work in senior leadership in the banking/financial services world, mostly focused on strategy and helping organisations navigate change. I also sit on the Board of the Westpac Chopper Trust, which supports rescue helicopter services across New Zealand, a role I’m really proud of. I’m looking forward to getting to know more of you, supporting the awesome work already happening, and helping strengthen our TS whānau across Aotearoa. Thanks so much for welcoming me — I’m excited for what’s ahead.