May Awareness Month 2023

May Awareness Month 2023

This year EDSNZ held two nationwide fundraising events, our third Annual Distance Challenge and our second annual Read-A-Thon. As a community, members participated in our online events, as well as support calls from EDSNZ, and took to social media to share awareness materials on a variety of topics created by EDSNZ and used the hashtag #EDSNZMAY2023  to get the word out!

EDSNZ are incredibly proud of our community in all their varying methods of raising awareness this May and thank you to everyone who participated in our event! Read on for more information about this year’s Awareness Efforts!


EDSNZ Distance Challenge 2023

Our third annual Distance Challenge kicked off May Awareness Month. Our goal was to see how far our community could travel when we band together, because together we dazzle! We picked routes of varying lengths, with the option to choose your own distance as well as method of achieving your goal – walk, run, swim, ride or roll to your goal was our motto.

We had 18 individuals sign up this year to take the challenge, 10 more than last year, and 6 teams were created, and they were amazing – as a collective we traveled 2,102km!

Our participants took some amazing walks through beautiful parts of the country which you can see below, gorgeous beaches, still lakes, incredibly forests, it makes one so feel happy to live in such a beautiful, and diverse, country and you can see some of the incredible photo’s they took on their walks below.

In total our participants raised $2471 to help EDSNZ continue providing support and resources for kiwi’s across the country with EDS. Thank you so much everyone for joining us!

EDSNZ Read-A-Thon

We had 3 people sign up to take the challenge, and they were amazing – Books read included Iron Widow, The Luminaries, Empire of Storms and more! Our participants got to lose themselves in fantastic worlds or learn new things all curled up in a nice cosy place while the weather raged on outside.

Thanks to the amazing fundraising efforts of everyone who participated who also raised an incredible $520!

EDSNZ Virtual Quiz Night

On the night our participants got to show off their movie trivia by being the fastest to answer correctly and be in to win some great spot prizes courtesy of our sponsors. The quiz lasted about 40 minutes in total, and everyone who joined had a great time! Congratulations to our spot prize winners, who won a Kylee and Co merch pack each, and the wining quiz team who won an EDSNZ merch pack including a phone grip, lanyard, awareness band, cooling bag, $10 MTA Voucher, and Whitakkers Sante Bar. While entry was free, our participants generously donated $75 in koha.

Social Media Challenge

This year for the first time ever we did a Social Media Challenge. Particpants were encouraged to share their story using our Social Media Challenge Prompts and share online using the #EDSNZMAY2023 hashtag. Our participants were all entered into a random giveaway draw and won a Kylee and Co merchandise pack with a Whitakkers Sante Bar.

Art Competition

Another first for EDSNZ, we decided to hold an art competition for the artists in our community.

We had 19 entries in the Under 16 category, and a further 5 in the Over 16 category. Entries were uploaded to the Ehlers-Danlos Syndromes New Zealand facebook page for the whole community to vote on. Congratulations to our two winners who won a Lego Creator 3-in-1 Set!


This year we were delighted to bring some fantastic sponsors on board who helped us out with supplying some wonderful prizes for our participants. Thanks to our sponsors for making this an incredible year to remember!

Thanks to our generous sponsor Kylee and Co, we were able to giveaway spot prizes in our events, as well as teaming up with them on a weekly giveaway that tied to into the topic of each week in May.

We also had support from Getting Lost NZ with a copy of their Getting Lost Everyone Edition, 2 Tea Packs from Dilmah TeaWhittakers Chocolate gave us Sante Bars to giveaway to every winner, MTA Vouchers courtesy of Mobile Gas Station in Featherston, and EDSNZ Merch Packs.

We had our prize giving early on the 6th of June and you can find a list of the winners, and their prizes, below.

Prize Giving

Congratulations to all our winners, we hope you had a fantastic time joining in our events, and that you enjoy your prizes.

This year we used Random Picker to generate our winners.

Distance Challenge Winners
Murray PDilmah Tea Pack  
Lauren JGetting Lost Accessible Edition  
Greer PKylee and Co Merch Packs  
Liam CKylee and Co Merch Packs  
Yvonne PKylee and Co Merch Packs  
Megan LKylee and Co Merch Packs  
Shannon SEDSNZ Merch Pack  
Jean BEDSNZ Merch Pack  
Bri CEDSNZ Merch Pack  
Bea GEDSNZ Merch Pack  
Rick MMTA Voucher  
Courtney M

MTA Voucher

Read-A-Thon Winners
Ruby TREDSNZ Merch Pack  
Heather LKylee and Co Merch Pack  
Julie NDilmah Tea Pack 

In total, through our communities’ various efforts to raise funds for EDSNZ we were donated the grand total of $3106! This was more than we ever expected to raise and quite frankly everyone at EDSNZ is grateful and in awe of how our community came together this May to support EDSNZ and help us with our various causes and discuss some interesting topics.

Again, we want to say a huge thank you to everyone for the support and for everyone’s efforts to raise awareness this month, we’re looking forward to next May already!