News & Updates

Raising Awareness in Hawkes Bay

Thank you Deborah Burnside for sharing your story and helping to raise awareness for NETs and Unicorn Foundation NZ. Click the image to read Deborah's story. 

Watch NET Education Day Talks Online

You can view some of the NET specialist talks from this years NET Education Day on Unicorn Foundation NZ's You Tube Channel.


Thank you again to our NET specialist speakers who all voluntarily gave their time to speak at this year's Education Day. ​Please keep an eye on the website for announcements about our NET Education Day for 2020.

New Car for Unicorn Foundation NZ

 Nomads Golf Club  presented the Unicorn Foundation NZ car. Thanks to the incredible generosity  of their members  we will now be able to increase support to our NET's patients.  We are so grateful for their amazing generosity.

CANGO - Calling for Pharmac review and new rapid access scheme

Unicorn Foundation NZ is part of CANGO, a collective of all the major cancer not-for profits in NZ. Read our position statement and call to action.

Did you know we have a online group for NETs?

Did you know we have a closed Facebook group for New Zealand NET cancer patients and their support people? 
It’s a great way for patients to connect without the restriction of location, and being a closed group this means that only members of the group can view or post questions/replies. 
If you would like to join our closed Facebook group please search for:
‘Unicorn Foundation NZ - NET Patients Group’  or send us an email and we will connect you. 

Our Craft Beer & Bites fundraiser was a HUGE success

Our third Craft Beer & Bites fundraiser was a huge success raising $36,000 from the auction items and over $70,000 over all. It was fantastic to have John Key in attendance who donated a very generous auction prize, TVNZ's Daniel Faitaua as our amazing MC, and a great auctioneer Wayne Maguire.

A big thank you to everyone who donated items, our attendees, all our brewery sponsors, and volunteers. An amazing night all round.

HUGE PROGRESS !

We have been verbally advised of the outcome of the recent Pharmac PTAC committee… they agreed with the recommendation which is to fund PRRT for NET cancer patients in NZ !! 
This is a hugely positive step forward, however there is still more work to be done to get the funding over the line. We will spend the next few months working with Pharmac and NET clinicians to outline all the infrastructure needed to be able to be able to deliver PRRT in NZ. Once all the information has been gathered, it will be ranked against all other treatments that Pharmac is considering for funding – hopefully ours will make it to the top of the list and we will do everything we can to help.

March 2018- NET patient nutrition survey

The University of Otago is conducting a research project to investigate the nutritional issues for NET patients. We invite all patients to take part in this survey, which takes approx. 20 minutes to complete. Respondents will be offered a $20 petrol voucher in acknowledgement of their time. If you would prefer to donate this to Unicorn Foundation NZ, (we will ensure they are given to NET patients in need), please just write ‘Unicorn Foundation NZ’ at the end of the survey. There is an information sheet to explain the detail of survey which I will put on our website, or if you would like it emailed directly to you, please email: NETS-Research@otago.ac.nz

March 2018 - Full page article in Sunday Star Times

Thank you to Jess Spence for speaking to media for us and sharing your brave story - you are helping many many kiwis. Jess is an excellent example of just how much our patients are self-funding their cancer treatment.
Pharmac - we need funding for PRRT urgently. NET patients like Jess have enough to worry about.

The latest news to share is that the FDA in the United States has just approved PRRT for NET cancers... this is huge and well overdue as Australians and most European countries have had access to PRRT for 20+ years! Come on #Pharmac ! The states now have it - we should too!

We have just heard the result from our Consumer Submission made to Pharmac, that the Cancer Treatments Sub-committee have: RECOMMENDED THAT PRRT BE FUNDED with medium priority for the treatment of un-resectable or metastatic, well-differentiated NETs (irrespective of primary site) that express somatostatin receptors.

It was cold, wet and busy but we all crossed the finish line still smiling. 
Thank you to this wonderful bunch of ladies for dressing up and helping to spread the word about Unicorn Foundation New Zealand.

Thank you to all our wonderful volunteers and Cafes supporting our World NET Cancer Day 2017 campaign this Friday - 10th November. 

This article linked below is beautifully written and is an important topic that needs to be addressed for all cancer patients.


Image: Getty Images

Call out to anyone who can help us in the lead up to World NET Awareness Day which is on Friday 10th November.

Please see our World NET Cancer Day 2017 page for details. 

We finally have an Office! We are at 130A Felton Matthew Ave, St Johns  - if you're in the neighbourhood feel free to stop by.

Kerry Jellick is another hard working Kiwi who has to self-fund their NET cancer treatment. Kerry has already paid for 2 cycles of PRRT but needs another 3 and will travel back and forth to Melbourne to receive it, (each cycle must be given 6 weeks apart).  If you can help please donate through the link below otherwise please share through your networks. 

https://givealittle.co.nz/cause/kerryjellick

Some of the Unicorn team gathered to listen to Professor Sandy McEwan visiting NZ from Edmonton, Canada. His talk was about his experience of setting up and delivering PRRT in Canada and is yet another expert talking of the importance of this treatment, in his words, "there is clear evidence that this works".

Join Us - Fun Run/Walk in November

Join our Unicorn team who will be walking, running or jogging in the Auckland Skechers6k in on Sunday November 19th. This is a community engagement event for NET Cancer awareness, so the more the merrier!

Just flick us an e-mail and we'll send you information on how to get started!

August 2017 - Come on Pharmac! You can do this!

We were recently advised that  that the Pharmac cancer committee were meeting last week to discuss our submission for funding PRRT for kiwis with NET cancer. Sounds like we wont know the outcome until October but will be sure to keep you all posted as soon as we hear. Regardless of this first outcome we will keep being the squeaky wheel for our community.

Fingers and toes crossed and keep spreading the word - NET cancer patients deserve funding for this life-changing treatment. Lives before dollars!

August 2017 - More Kiwis fundraising for their cancer treatment

Dave is another hard-working Kiwi who has also been told he needs PRRT and will need to raise over $50,000 for his cancer treatment. He will then need to travel back and forth to Melbourne every 6 weeks and spend a week there each time. The financial burden and the treatment is not easy on anyone, and being away from support networks is really tough. This why PRRT should be funded and established within a centre of excellence right here in NZ - looking after Kiwis no matter what their financial situation is. Please help Dave if you can. Lives before dollars.

https://givealittle.co.nz/cause/davescancerfight

August 2017 - CANGO Debate in the news

Health Minister Jonathan Coleman made his comments at a cancer debate on Tuesday night in Wellington.

After his speech, Siobhan Conroy, chief executive of the Unicorn Foundation, said: "Actually, I think we are the laughing stock. If you look at the number of Givealittle pages – the number of New Zealanders out there currently seeking access to treatment and medicines – we're not doing that well."

August 2017 - CANGO presents manifesto to Minister of Health

CANGO (Alliance of 9 NZ Cancer orgs ) met in Wellington this week to present our manifesto to the Minister of Health, politicians and their health advisors. We are encouraging all political parties to work with us to help kiwis receive improved cancer care, funding and access to treatment no matter where you live in NZ. 

July 2017 - Labour vows to end 'post-code lottery' of cancer care

We are very excited to see the The Labour Party announcement on cancer care in NZ and committing budget towards it. 

 

Thank you Labour for taking a stand, we hope all political parties in NZ realise that change and budget is needed urgently. Lives before dollars.

July 2017 - of NZ 2017 Highlights Video

This video is just a snippet of some of our highlights from the Tour of NZ 2017, and to thank all the incredible people who helped make this event a huge success.

Massive gratitude to every single one of our Unicorn cyclists who rode the length of the South Island to raise $170,000 for New Zealanders affected by Neuroendocrine Cancer. Enjoy and feel free to share this video of beautiful New Zealand.

July 2017 - for My Wife - Give a little campaign for Elaine Iketau

Elaine is just 31 years old, a mother of two, and has been diagnosed with extensive NET cancer.

 

She needs our help. She needs to raise over $50,000 urgently to pay for Peptide Receptor Radionuclide Therapy (PRRT), which is her best option to gain precious time with her young family. We need PRRT to be funded for all New Zealanders for the benefit of families like these.

 

Please share widely. https://givealittle.co.nz/cause/life4mywife 

June 2017 - lobbys Pharmac to Fund PRRT

We recently met with Pharmac and submitted 2000 signed letters to support our petition to help improve access to life-changing treatment for NET cancer patients.

We think this was the beginning of open dialogue and positive progress for our NET Cancer community. Still lots of work to be done but all moving forward.

May 2017 - Cancer patients travelling to Australia for treatment plead for Pharmac funding

With more than 1800 signatures and the backing of her Tamaki MP and chair of the Health Select Committee Simon O'Connor, Conroy hoped Pharmac would consider it. 

May 2017 - MP urges Pharmac to consider 'gold standard' neuroendocrine cancer treatment

"This particular treatment is pretty much the gold standard or the best approach, hence I think it is really important that Pharmac considers this," O'Connor said.

May 2017 - Neuroendocrine Cancer sufferer has to travel from New Zealand to Australia for treatment

The Sydney Morning Herald picked up our story about us seeking funding for PRRT for kiwis with NET Cancer.  Jess and many other New Zealanders are self-funding this life-changing treatment. We desperately need Pharmac to fund PRRT for patients just like Jess NOW.

May 2017 - We need your help...

Please print and sign our letter (click link below or image), we are asking Pharmac to fund treatment for kiwis with NET Cancer.  
 

You can help by signing and returning our letter, please click here to read more: https://www.unicornfoundation.org.nz/bring-prrt-to-nz

May 2017 - BIG news - Prof Rod Hicks to speak at NET Education Day

We are excited and honoured to have Prof. Rod Hicks, Director of Medical Imaging at the Peter Mac Cancer Centre in Melbourne joining us to speak at our annual NET cancer Education Day. To book your place, click here to register:  https://goo.gl/xz86oB

May 2017 - Register now for our annual NET Education Day 19 May 2017

Click on the link to secure your place. You can also book and purchase your lunch which will be on-site at the Sudima Hotel.

 

Click link here: https://goo.gl/xz86oB

March 2017 - Training and fundrasing at the same time!

Awesome father and daughter team helping to raise funds and awareness for Unicorn Foundation NZ:

 

 

http://www.stuff.co.nz/auckland/local-news/eastern-courier/90469513/cyclists-riding-700km-to-make-a-difference

March 2017 - Unicorn in the news

Press during the Tour of NZ, Unicorn in the news:

https://www.tvnz.co.nz/one-news/new-zealand/they-cant-afford-cost-kiwi-cancer-fighters-face-death-sentence-without-vital-50k-treatment

March 2017 - Stuff Article - Cancer charity 'jumping up and down' to get treatment in NZ

Thank you Katy, Andrew and Peter for helping to create much needed awareness for NET Cancer and the work of Unicorn Foundation NZ. We are 'jumping up and down' because we believe its time that PRRT treatment is funded and brought to NZ, (it has been used in Australia for over 20 years!).

Feburary 2017 - Dedicated cyclists helping Unicorn

Introducing Dave and Brodie who are part of our team of 55 Unicorns who will be cycling the entire length of the South Island in the Tour of New Zealand starting on 1st April. The Tour of NZ is a huge cycling race that covers 700km in just 7 days throughout beautiful (and hilly) NZ. In the lead up Dave and Brodie will be doing their training at Botany and St Lukes malls and also collecting donations at the same time - perfect multi-tasking! On this tour we are incredibly fortunate to have support from our corporate partner Ricoh New Zealand Limited who are riding with us. To read about why Dave and Brodie are helping Unicorn click here: https://goo.gl/Zo44g2

Feburary 2017 - GODZone! They did it!

Pictured here is the Team Pic's Peanut Butter about to cross the finish line of GODZone Adventure - 500kms of pure determination. They had to be 100 meters from each other at all times, and poor Hazel was injured but managed to battle on to finish this epic adventure. This team of four kind souls managed to fundraise over $8000 for Unicorn Foundation New Zealand. We are so grateful to them all. http://givealittle.co.nz/cause/godzone

Feburary 2017 - 'Meet the Professors!'

Loads of stimulating discussion and a great turn out for our ‘Meet the NET Professors’ session last night.  

A HUGE thank you to Dr Simron Singh, (from Canada) Dr Eva Segelov, (Australia) and local Dr Ben Lawrence for taking the time to sit down and talk directly with our Unicorn community.

Knowledge to power and we hope to provide more opportunities for patients to extend their understanding of this quirky cancer.

January 2017 - Our Chairman Dr Malcolm Legget selected as a finalist for NZ of the Year Award!

We are very excited to share that our very own Chair of Unicorn Foundation NZ, Dr Malcolm Legget has been selected as one of the top ten finalist for 2017 New Zealander of the Year Awards !!
This is such wonderful news and well deserved acknowledgement. Malcolm has made an outstanding contribution to the well being of the nation through his work as a cardiologist, his research projects and improving the lives of NET cancer patients through Unicorn Foundation New Zealand, all this despite living with NET Cancer himself.
Congrats Malcolm - we are so proud and lucky to have you on our team!

December 2016 - Christchurch patient meeting

Our recent patient meetings in Auckland and Christchurch were fantastic and it was a great way to end the year. We are so grateful to spend time with so many lovely people.
We have started to capture patient experiences on film to create some short awareness videos next year, so if you are a NETs patient or support person and keen to help create awareness about NET Cancer then please do get in touch.  Wishing all of our community a wonderful xmas - from all of the Unicorn Team. xx

December 2016 - New Ambassador Olympian Brooke

Some very exciting news - Brooke Neal pictured here on the right is one of NZ’s best hockey stars and recent Olympian at the Rio games, has accepted a role as an ambassador for Unicorn Foundation NZ!!  Brooke has personally been touched by NET cancer after her dear friend Caitlin passed away 2 years ago when she was just 21 years old. Brooke knows how important it is for treatment to be accessible and funded for ALL New Zealanders and will help us to create more awareness. She is an absolute star full of warmth and energy - we feel very lucky to have her on the Unicorn team! 

November 2016 - NZ research presented at Theranostics conference in Melbourne

NZ's own Dr Ben Lawrence presenting the NETworks genomic research results at the 4th Theranostics world congress in Melbourne. Huge conference of around 380 delegates from all over the world discussing imaging and treatment for NET cancer and Prostate cancer. 
FACT: NZ needs improved access and funding for cancer treatments - we are well behind the rest of the world. 

November 2016 - Unicorn Foundation Australia host Theranostics

Pictured here is the incredible Simone Leyden, CEO of The Unicorn Foundation Australia welcoming the Governor of Victoria to open the NET patient symposium at Peter MacCallum Cancer Centre today. Fantastic speakers throughout the day, amazing things happening in Australia. We have a lot of work to do in NZ but we are so grateful for the Australian team who always welcome us kiwis with open arms. 

November 2016 - World NET Awareness Day was a huge success!

World NET Cancer day on the 10th of November was a huge success!

Printed coffee cups were sent all over the country and so many cafes jumped to help us raise awareness about NET Cancer in NZ. 'Lets talk about NETs' is just the start of the conversation to get NET Cancer more widely known. Check out our video to see some of the highlights.

Many thanks to our fantastic volunteers: Andrew Rose, Donna Klass, Lorene Royal, Maree Lamont, Lavinia Jacobsen, Jenny Gray, Margaret Garden, Jackie Crespin, Angela Hirst, Cheryl Marriott, Marj Vaughan, Rona Lemalu and Ailsa Watts.

October 2016 - Craft Beer & Bites event

This was an amazing evening with NZ's finest craft beer, delicious canapes, auctions and fabulous entertainment! Thank you to everyone who made the night a success. We managed to raise over $30,000 and made loads of new friends too! Live music by talented duo, Erika Takacs & Mike
Kindly supported by Behemoth Brewing Company,The Sawmill Brewing CompanyTuatara Brewing,Zeffer Cider CompanyWilliamsWarn and Hallertau Brewery.
MC'd by Radio Sport's, Marc Mendoza, from "The Crowd Goes Wild" Breakfast.

September 2016 - Sir Graeme Douglas

We are incredibly sad to hear of Sir Graeme Douglas’s passing and wish to acknowledge the generosity shown by both Graeme and his lovely wife Lady Ngaire Douglas to our NET Cancer community. The NET Gatate scan we established in Auckland in November last year would not have been possible if it weren’t for their kindness and vision in their philanthropy to help so many people.

Pictured here launching Gatate scanning for the first time in New Zealand in November last year, we can report that already over 100 NET cancer patients have been through this scan where previously they would have had to self-fund and travel to Melbourne. Also over 350 prostate cancer patients have also been through this scan too.
Our whole community have benefited from their gift and we are forever grateful to them

Sir Graeme was so protective and gracious towards his wife and they really were just the sweetest couple. Our love and thoughts are with Lady Ngaire and their entire family.

July 2016 - Razor for a Reason

Team MHXK (an alliance of Fletcher Construction, Beca, Higgins and NZ Transport) rallied together in support of their colleague and patient, Andrew Rose, to raise money and awareness for Unicorn Foundation NZ and NET Cancer. 
25 amazing men and women had their locks, beards, mo's and eyebrows shaved. We were so overwhelmed by the support and spirit of this very special bunch of individuals.

Many thanks to Renee and Adele for organising such a successful event, all the volunteers who shaved and were shaven, and to all those who are supporting. 
You guys are phenomenal!

July 2016 - Christchurch quiz night

The Christchurch Quiz Night fundraiser on Monday evening was a great success, loads of wonderful people filled the room for a fun night out where they not only learnt about NET cancer, but they also managed to raise over $2,300. Thank you to all those who attended and supported this event. A big thank you to nurse Nadine Peake who gave an introduction about NET Cancer, and patient Andrei Martin (pictured below) who spoke about his journey and how he has received PRRT treatment, (self-funded and traveled to Australia), and he is living really well because of it. Andrei is an excellent example of why we need the treatment here in NZ right now! A huge thank you to Marj who managed to pull the evening together, Marj is also a patient and has just blown us away with her dedication to help the NET Community. 
Wonderful, wonderful people in Christchurch, we can't thank you enough. Thank you from everyone at Unicorn Foundation NZ.

July 2016 - Hotties 100

Fantastic turn out for 'Hotties 100 - Ride for a reason' today, especially with the crazy chill factor early on. It was a pleasure to ride with so many amazing women, thank you to everyone who braved the cold and for supporting our charity. Thank you to everyone who made the day a success. 

June 2016 - Running for a Reason - thank you George!

George is a legend. Not only did he cycle the length of the North Island to help us fundraise during the Tour of NZ, but he has taken on another huge challenge to run the FULL Christchurch Marathon on 5th June. George knows NET Cancer all too well. He has watched his father Malcolm (our chairman) go through a brutal diagnosis and all the treatment following it. The Legget family are an incredible bunch who even through adversity are determined to help others. Huge congrats and gratitude to George Legget , who in the process managed to raise $2,100 for Unicorn Foundation NZ.  George - you are AMAZING. 

Every dollar makes a huge difference for a small charity like ours, and helps us to continue our work. Thank you to everyone who supported George, much appreciated.

May 2016 - Our voices were heard - Chemo drugTemozolomide approved for NETs

Currently a chemotherapy drug called Temozolomide often used in the treatment of NETs is not funded here in NZ. Every time a patient requires this drug their specialist has to make a special application to Pharmac for consideration, and sometimes it gets declined. This is an oral drug which is widely used here and overseas. Pharmac are considering funding Temozolomide and they are seeking urgent feedback. I am sure you will agree that funding this important drug would be hugely beneficial - not only for NET patients but also the time spent by doctors who spend hours filling in special applications for its use.

 

Updated; Thank you to all those who signed our letter - happy Unicorn here holding around 150 signed letters asking Pharmac to fund Chemotherapy drug Temozolomide - a fantastic response

May 2016 - Unicorn NET Education Day 2016

We had around 100 participants in the room and it was fantastic to see and meet so many wonderful patients, support people and medical professional who were eager to learn more about NETs. Thank you to all the speakers and especially those patients and families who attended to be there. We hope you found the day interesting and we look forward to holding a similar and longer event next time.

January 2016 - New events website - Ride for a Reason