This year marks the 50th AGM for our organisation, which is an occasion worth commemorating. The society had 2 AGMs before its incorporation in 1976 and has supported people with coeliac disease in New Zealand for over 5 decades. A lot has changed in that time, but our vision remains the same, and that is that people with coeliac disease live healthy lives every day. This report focuses on the year commencing 1st April 2023 and ending 31st March 2024.
As General Manager of Coeliac New Zealand, it is again a privilege to present this report to you on behalf of our team. Some of this content may seem familiar but it does not make it less worthy of inclusion.
Please also read the following reports provided separately
The Board
Coeliac New Zealand has a strong, skilled, and engaged board to carry out the governance (or oversee management) of its operations. Currently they are Chair Brett Thorburn, Vice Chair Kirsty Vercoe, Treasurer Corinne Cameron, Board members, Rosie Jerram, Max Smitheram, Jenny Kuttel, Gary Peacham. All of these people generously gift their time, skills, and energy to Coeliac NZ, and we could not function without them. Ben Grant, Parminder Morgan, and Richard Aitken resigned this financial year, and new members Katie Martin, Jenny Stoddard-Howell and Sarah Neilson have been recruited to fill these vacancies at this year’s AGM. Please see the board profiles for more information about each of these individuals who share our passion for improving the lives of people with coeliac disease.
The Staff
This is a dedicated small team of staff who work hard to deliver against the key priorities of the organisation. Fred Tan our Administration and Membership Manager, Dana Alexander our Sales and Marketing Manager, Lisa Jury our Health Promotion Manager, and registered dietitian Suzanne Aitken whose fixed-term contract as our Dietary Education Manager has been extended to 31/3/2025. Lisa resigned from her role on the 7th of June 2024 and her replacement Karina Ledwos joins us to continue to deliver against our Health Promotion priorities. Some highlights from the work they have throughout the year are mentioned in their separate report. It is impossible to sum up the contribution these skilled individuals bring to this organisation on a daily basis, working within the confines of a not-for-profit organisation in these challenging financial times.
The Volunteers
Our volunteers are another group of very important individuals who contribute to our organisation. Some of the activities they engage in feature in our regular monthly newsletters and others a less conspicuous but just as important. Perhaps it’s chatting to a new member about their coeliac journey, offering a friendly ear when someone needs one or just sharing information and resources with local members. They delivered 42 events last year throughout the country and of varying sizes with over 2k attendees in total. Delivering events is important but so is advocating in our communities, which is another role they undertake. Visit our website to view the full list of these fabulous individuals. If you are interested in becoming a volunteer, please get in touch via healthpromotion@coeliac.org.nz
The Medical Advisory Panel
This team of busy experts in the field of coeliac disease play a key role in the organisation, providing expertise, support, and advice to the organisation. The panel consists of:
We Make a Difference
Living with coeliac disease or gluten intolerance can be hard. Managing your coeliac disease and your mental health go together. Poorer mental health is generally associated with poorer gluten-free diet management. Conversely, the better your mental health, the more likely you are to follow the gluten-free diet effectively. Living with coeliac disease means navigating an additional set of challenges related to adjusting to and/or maintaining a gluten-free diet. Kai is such a big part of New Zealand’s culture and being able to eat safe gluten-free food at activities with others is important. Information is essential to support people with coeliac disease as well as their whanau and the wider community.
With the help of our Medical Advisory Panel, CNZ develops resources to support the care of people with CD. When a person joins CNZ as a member, they receive a welcome pack with valuable resources and links to help them navigate their coeliac journey. As part of the CNZ community, you also gain valuable advice and assistance when you need it. Gain access a wealth of member-only resources, up-to-date research, support groups, kids clubs, unique offers, and our twice-yearly Coeliac Link magazine.
A strict, lifelong gluten-free diet is the mainstay of treatment. Although a gluten-free diet is effective, there are recognised challenges, particularly from a social perspective, and especially during teenage years. At the other end of the age spectrum, one of the challenges is changing a lifetime of dietary habits as well as limited financial or social resources, and the possibility of limited mobility that restricts their ability to walk or travel to gluten-free suppliers. CNZ has the necessary resources to support you with label reading and communication for work colleagues, schools, and organisations. Webinars and videos to keep you informed on our YouTube channel and regular updates via our newsletter and social media channels, as well as our twice-a-year coeliac link magazine.
CNZ is the voice for coeliac disease in NZ and we are here to support you. The importance of your continued membership cannot be underestimated, and we thank you sincerely for your support.
Please help us to help you! Having someone committed to being a long-term member makes a significant difference as the work we do is not just about the first or second year after diagnosis, it is about supporting you throughout your coeliac journey for life.
Coeliac Awareness Week
For 2023 our theme was “My Coeliac Challenge – Take Charge get diagnosed and find help” The campaign was very successful, with very strong media support throughout the week.
Conference
The theme for the conference in November 2023 was Coeliac Challenges and Successes, and we were excited to partner with The Gluten Free Food Festival for their second annual festival at the iconic Due Drop Events Centre in Manukau.
Our wonderful master of ceremonies Sam Walter managed the day’s agenda superbly. It included our experts from the Medical Advisory Panel, mentioned earlier in the report as well as Tania Clifton Smith’s presentation on “How to Take a Breath”, Karen Faisandier on “Coeliac Disease – Your Brain, Food and Mood, husband and wife team Dr Kamran Rostami and Adele Rostami on Non-responsive coeliac disease from a gastroenterologist and dietitian’s perspectives and Dr Bob Anderson and Dr Jason Tye-Din giving us an insight into international research and coeliac disease diagnosis. Our board also had a panel with presentations about their lived experience. 224 people attended the conference and over 2000 people attended the festival. A big thank you to our conference sponsors who enabled us to deliver such a successful event: platinum supporters: ANZCO Foods Limited, Arnott’s, Fresh Life, Hubbard Foods Limited, Lee Kum Kee, Van Dyck Fine Foods, gold supporters: Optimal Clinical Trials, OMG Decadent Donuts, Pacific Clinical Research, Tokyo Food Co, bronze supporters: Jayen Food Concepts Ltd, Mamma’s Amore Pasta, and Windcave Limited.
Our survey feedback from attendees included some of these great comments:
”Appreciated the goodie bag - thank you & I always enjoy networking & meeting new people at the conference. Great to be able to attend the GF Food Festival & see the work people are doing to make the GF diet more appealing - lots has changed in 20yrs since I was diagnosed. Thank you to the hard work of Coeliac NZ”
“ A great conference. I love keeping up with the latest research. Plus, great idea to combine this with the GF Free Food Festival. And thanks for the goody bag.”
“The event was so well organized and so professional. There was not a single thing I can fault. Everyone with coeliac disease should go to the CNZ conference. I learned so much. I was diagnosed 25 years ago, this was my first conference, and it certainly won’t be my last.”
Though we are not delivering a conference this year (2024) we will be holding a series of workshops as a community partner for the 2024 Gluten Free Food Festival in October. Some of our crossed grain logo accredited manufacturers will also attend this event. We will also hold a small event in Christchurch on the 2nd of November to enable people to attend and hear from Dr Andrew Day and Sophie Hall as well as some of our staff. Put the date in your diary if you are in the area and we will provide more information closer to the time.
Financial Performance
CNZ budgeted to operate at a loss this past fiscal year and we have budgeted to operate at a loss again next budget year. We are using the reserves accumulated over the previous 4 years to cover this. It was a conscious decision to ensure we could deliver the conference at an affordable cost for attendees and also to ensure we could continue to employ the dietary education manager until March 2025. Over the coming 12 months we will be focusing on how we can increase our revenue going forward in the future years to ensure we remain a sustainable and viable organisation. If you would like to donate to our organisation to support the work we do, please visit our website, or contact me or our Administration Manager Fred admin@coeliac.org.nz.
Thank You
Our organisation could not have survived 50 years without your ongoing support. Thanks to our members, volunteers, board, MAP, ambassadors, crossed grain logo and dining out partners, and donors, Chapman Tripp and other people and businesses who support us.
A special note of thanks to our grant funders - The various committees of the Community Organisation Grants Scheme around NZ, Foundation North, The Lion Foundation, The NZ National Lotteries Community Fund, Pub Charity, and Aotearoa Gaming Trust.
Wendy Bremner (General Manager)
If you are seeking help with a diagnosis of coeliac disease
BECOME A MEMBER: during June and pay only the annual member subscription and save $35 off the joining fee.