May Awareness Month 2021

May Awareness Month 2021

June 21, 2021 Fundraising 0

May Awareness Month 2021

This was our biggest fundraising awareness month since the inception of Ehlers-Danlos Syndromes New Zealand in 2018, then known as the Ehlers-Danlos Society New Zealand.

EDSNZ held a large nationwide fundraiser, a distance challenge to see how far we as a community could travel New Zealand, our President, Kelly, shaved her head for awareness, and a member of our community put on a Livestream fundraiser on Twitch in a 24-hour marathon to raise awareness and funds for EDSNZ. As a community, members participated in our Distance Challenge, they took to social media to draw attention to EDS, not only as a medical condition, but also how it affects them personally, using the hashtags #MyEDSChallenge and #MyHSDChallenge, they donated money to EDSNZ through sales, shaved heads and so much more!

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!


Our first annual Distance Challenge kicked of 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 27 people sign up to take the challenge, and they were amazing – as a collective we travelled 1843km, the entire length of the North Island, covering 58 trails of varying lengths from Cape Reinga to Wellington, a distance of 1600km’s on the Te Araroa Trail. We then completed the first three tracks in the South Island leg, all within the beautiful Marlborough Sounds, and started on the 4th track, which means we fully completed 61 tracks out of 87 during our distance challenge!

The Te Araroa Trail is Aotearoa/New Zealand’s biggest walk and spans a whopping 3000km! The North Island covers 1600km’s and 58 trails which covers the length of the North Island from Cape Reinga to Wellington. The South Island portion of the Te Araroa Trail starts at the Queen Charlotte Track in the Marlborough Sounds, and covers the remaining 1400km’s down to the Bluff.

The entire Te Araroa trail encompasses 87 walks across the country and on average takes about 4 months to complete. To put this into context, in the U.S the most well-known long hike is the Appalachian Trail, which is 3500km long, one of the most famous walks in Europe is the Camino de Santiago de Compostela and spans 2,530 km.

Thanks to the amazing fundraising efforts of everyone who participated, we also raised $2000! These funds helped us purchase purchase TWO copies of the Kevin Muldowney book ‘Living Life To The Fullest With Ehlers-Danlos Syndrome’, to be available for medical professionals and physio therapists around the country when setting up treatments plans for their EDS patients. We have also been able to spend some of the funds raised by purchasing a year-long pass to every virtual conference EDS International are holding for the rest of the year. The remaining funds will be put towards getting EDS medical documents translated in Maori.

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Below are some photo’s sent in by some of our participants as they worked towards their target goals.

Kelly's Head Shave

Kelly is known for her long brightly coloured hair, among many things, so for May Awareness Month she decided to shave her head to raise awareness and funds for EDSNZ. In Kelly’s own words “What a great way to show awareness of an invisible disorder by doing such a visible task. We set Kelly up with a fundraising page so she could share her fundraiser with friends and family, and she raised an incredible $110 dollars during her fundraiser!

kelly shaved head
Twitch Livestream Fundraiser

Brittany came to us with an idea of doing a 24-hour Twitch Livestream marathon to raise awareness of EDS and fundraise for EDSNZ. This was a unique idea that we were excited to help out with, so we arranged for free advertising in the form of a banner, and background support via email. This included providing some information on EDS that Brittany could use as talking points during her marathon.

While staying awake for 24 hours livestreaming was difficult, Brittany was so pumped up afterwards she struggled to get to sleep initially. She had a fantastic time during her livestream and said she would happily do it again, albeit with a few changes now that she’s had the experience!

Brittany raised $83 for EDSNZ during her 24-hour livestream, thank you so much Brittany!

Other fundraisers included members of our community donating to EDSNZ based on items sold from their shops. Vianne pledged to donate $1 per piece of jewellery sold from her shop for the month of May, while Jennifer pledged $5 per bath soak and kawakawa balm sold! EDSNZ thanks you both for your support!

In total, through our communities’ various efforts to raise funds for EDSNZ we were donated the grand total of $2301.07! This was more than we ever expected to raise and quite frankly everyone at EDSNZ is grateful and in awe of how our community come together this May to support EDSNZ and help us with our various causes.

Again, we want to say a huge thank you to everyone for the support and for everyone’s efforts to raise awareness this month!