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EDS Clinical Pathway

After much hard work by many clinicians in the field, we are lucky enough to have this Ehlers-Danlos Clinicial Pathway.

This document is made for all clinicians in New Zealand who may need some guidance with treatment and diagnoses.

Please find the link here to this document. Please feel free to share this document with any clinicians you feel may benefit from reading these guidelines.



Performance Report 2022

Performance Report for Ehlers-Danlos Society New Zealand Incorporated, also known as Ehlers- Danlos Syndromes New Zealand.

Year ending 31 March 2022.

Full Performance Report available in PDF Here, with a preview of the contents below. Please feel free to leave a comment via the contact form below if anything needs changing.

Contents

Non- Financial Information

  • Entity Information
  • Statement Of Service Performance

Financial Information

  • Statement Information
  • Statements of Resources and Commitments
  • Notes to the Performance Report

Entity Information

Who we are? Why do we exist?
…………………………………………………………………
Legal name of entity : Ehlers-Danlos Society New Zealand Incorporated
Also known as : Ehlers-Danlos Syndromes New Zealand
Type of Entity and legal basis (if any) : Non-Profit Charitable Society
Registration number : CC55826
Society number : 2704932
…………………………………………………………………

Enitity’s purpose or mission:

Our mission is to improve the wellbeing of those with Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders in Aotearoa New Zealand by raising awareness, improving knowledge by health professionals and providing support to patients.

Ensuring that medical professionals and patients have access to the correct information, and that patients are able to access support, and that patients know their rights and know how to advocate for themselves.

Entity Structure:

Ehlers-Danlos Syndromes New Zealand’s Leadership consists of the President, Secretary and the Treasurer. Our Committee size has fluctuated during this year. We had a total of 7 committee members at 31 March 2022.

The main Sources of the entity’s cash and resources:

This year we have received donations from fundraisers, personal donations, and as birthday donations, all of whom have been thanked for their donations. We held our first ever nationwide fundraiser, the Distance Challenge, to raise awareness and funds for EDSNZ. We have also done a merchandise-run of T-shirts, lanyards, phone-grips, cooling towels, coffee cups, and earrings. We have also connected with Techsoup to tap into their non-profit resources, have a Non profit discount with Xero, and have connected with Reward Hub after this resource became available since COVID-19. We purchased two Kevin Muldowney books “Living with EDS” for professionals to borrow

The main methods used by the entity to raise funds:

The main way we actively received money through our own efforts was through our first ever Distance Challenge, which raised $2,164.11, and our secondary source was from merchandise sales which raised $1,690.00.

Because of this pandemic, it has been made blatantly clear where the holes are in the system, and in turn where improvements can be made. It is also shown us how accessible things can be made for us. We hear what our community needs are and we are joining with other communities to ensure our voices are heard. The accessibility that has opened up for us here in New Zealand, means that we have been able to join much more international conferences than we ever have had in the past.

– Kelly McQuinlan, EDSNZ President.

May Awareness Month 2022

May Awareness Month 2022

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.

This year EDSNZ held two nationwide fundraising events, our Second Annual Distance Challenge and our first ever Read-A-Thon. As a community, members participated in our online events, as well as support calls from EDSNZ, joined in on zoom calls with Dr. Leslie Russek continuing her Hypermobility 101 Series and took to social media to share awareness materials on a variety of topics created by EDSNZ and used the hashtags #EDSNZMay2022, #MyEDSChallenge and #MyHSDChallenge to get the word out! Our community also supported EDSNZ by buying merchandise including the May 2022 Fundraising Hoodie and other goodies such as reusable Zebra Mugs, phone grips and more found in our shop.

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!

Second Annual Distance Challenge


EDSNZ Distance Challenge 2022


Read more about the Second Annual Distance Challenge

Our second 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 8 individuals sign up this year to take the challenge, and 2 teams were created, and they were amazing – as a collective we traveled 716km!

Screenshot over an overview of Distance Challenge 2022
Screenshot over an overview of Distance Challenge Participants 2022

Our participants took some amazing walks through beautiful parts of the country which you can see below, gorgeous beaches, still lakes, incredibly forests, and wonderful open fields, 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.

Mangawhai Heads
Mangawhai Heads
Mangawhai Heads
Mangawhai Heads
Mangawhai Estuary
Mangawhai Estuary
Mangawhai Estuary
Mangawhai Estuary
Greytown
Fensham Reserve
Fensham Reserve
Fensham Reserve
Fensham Reserve
Fensham Reserve
Fensham Reserve
Lake Ferry
Lake Ferry
Lake Wairarapa
Ocean Beach
Ocean Beach
Ocean Beach

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In total our participants raised $3900 to help EDSNZ continue providing support and resources for kiwi’s across the country with EDS. Thank you so much everyone for joining us!

Map of NZ with distance travelled

First Annual Read-A-Thon

EDSNZ’s First Annual
Read-A-Thon


Read more below about the first ever EDSNZ Read-A-Thon

We had 3 people sign up to take the challenge, and they were amazing – Books read included Bridget Jones’s Diary, The Chronicles of Narnia, The Chocolat series and  Ayureveda: Ancient Wisdom for Modern Healing 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.

Screenshot Overview of Read-A-Thon 2022

Thanks to the amazing fundraising efforts of everyone who participated who also raised an incredible $699!

Ayurveda
bridget-joness-diary
Chocolat
chronicles of Narnia

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Sponsors

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!

We had some amazing goodies from Spirit Sparkplugs, a store owned by one of our community members. They provided us with a Migraine Mask valued at $90, along with 12 zebra themed masks, zebra earrings, zebra tweezers, zebra pegs, zebra socks, zebra keyrings, zipper pull loops, bottle caps, glasses buttons for face masks, anti-fog glasses wipes, and so much more. Thank Spirit Sparkplugs! We really appreciate your generous donation, and can’t wait to check out what else you have in store!

We also had support from Zespri NZ who generously donated 6 trays of kiwifruit, 2 Shakti Mats from Skakti Mat NZ, a copy of the newly released Getting Lost Accessibility Edition game from Getting Lost NZ and various goodies from EDSNZ.

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

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Shakti Mat NZ
Zespri
Getting Lost NZ

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Raising Awareness

EDSNZ decided to go just a bit bigger this year than we did last year, and we themed the entire month with awareness topics specifically for our community!

Week 1 started with the topic of Comorbid conditions that are commonly diagnosed alongside EDS. We touched on the gut, and how many different conditions affecting the gut EDSers are commonly afflicted with such as IBS, Gastroparesis and Reflux (GERD). We also discussed Postural Orthostatic Tachycardia Syndrome, Mast Cell Syndrome and the various Neurological issues that can be found with EDS. EDSNZ put together a host of infographics that could be shared on social media by the community and finished the week with an online video chat with members of the community about how comorbid conditions affected them.

Awareness month 2
Awareness month 1
Awareness Month week 1 1
Awareness month 3
May 2022 logo
Week 1 3
Week 1 4
Week 1 5
Week 1 2
Week 1 6

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Week 2 we focused on Knowing Your Rights, specifically those posters we’ve all seen at medical practioner’s offices. Knowing one’s rights can be a confusing topic so infographics were put together to break down what our rights are and explain some of these in further detail. We also put together a resource packet on Knowing Your Rights according the Health and Disability Comission and the UN’s definition. You can explore this topic more in our resources section. Kelly, our president, also put together an incredible presentation for our community in an online video chat about tips for getting the most out of a doctors appointment. This presentation was informative and fun, and included a Q&A session at the end. You can see the presentation here or read more about Getting The Most Out Of Your Doctors Appointment in our resource section.

Know Your Rights
Know Your Rights
Know Your Rights

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Week 3 focused on Exercise and Movement and we got helpful advice from Kylie Staples, Podiatrist and owner of Core Clinic, on the best kind of shoes to wear to suit our needs. We were also joined by Dr. Leslie Russek who continued her Hypermobility 101 Sessions with EDSNZ with an open online video chat and presentation on Hypermobility 105 – Posture and Joint Protection. If you missed the video chat, you can rewatch it here, along with any previous sessions you may have missed. Jeannie Di Bon also created a presentation with some fantastic tips about exercise and movement for EDSNZ to share with the community, and generously offered a discount to our community members to her Zebra Club! You can find out more about the offer here.

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Exercise and Movement

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Week 4’s topic of discussion was the rarer types of EDS. There are 14 known variants of EDS but only three are commonly talked about – Hypermobile EDS, Classic EDS and Vascular EDS – so EDSNZ shared infographics with the community about what the other types are and the common associated characteristics of those types. We were joined once again by Dr Leslie Russek on the topic of Cervical Instability Part 1, where once again we enjoyed a presentation on the topic as well as an informative Q&A session at the end. If you missed the live video call, you can watch that here. We also dressed up in red for Red for vEDS day to highlight Vascular EDS.

pEDS
kEDS
mEDS
spEDS
mcEDS
dEDS
aEDS
BCS
clEDS
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cvEDS

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Week 5 lasted only two days, but we focused on resources which can help the community and wound up the month with a Mental Health support call on the 31st of May. There were some interesting questions raised, and some great laughs had by all by the end of the call.

Social Media

EDSNZ created our own hashtag that could be used all over Social Media to promote May Awareness Month #EDSNZMay2022 while Ehlers-Danlos Society created the hashtags #MyEDSChallenge and #MyHSDChallenge. These hashtags were used on Facebook, Lindkdin, Instagram, Tiktok and Fitbit to promote awareness about EDS and how it affects each person individually. Thank you to everyone who took the time to promote not only EDS but also EDSNZ this month. You’ve all done an amazing job.

Prize Giving

2022 saw us host our first every prizegiving. Eligible participants from our two events and social media awareness campaign were entered automatically in the draw to win some fantastic prizes from our sponsors. Below is the results of our prize giving.

Winners – 

Kiwifruit Green from Zespri NZ

  • Rick McZany
  • Emerald Maz
  • Wheely Wives

Kiwifruit Gold from Zespri NZ

  • Hazel Watson-Smith
  • Emma Cochrane
  • Kerry-Anne Turner

Shakti Mat from Shakti Mat NZ

  • Evelyn Philip
  • Lenette Breytenbach

Getting Lost Game from Getting Lost NZ

  • Renee Hodgson

Easy Tie Shoelaces from C1 South

  • Lenette Breytenbach

Migraine Mask from Spirit Sparkplugs

  • Jenny Cosgrove

In addition, each participant in our May Events won a small prize pack consisting of a set of 2 Zebra Striped Masks and 1 set of Glasses Clips for wearing masks from Spirit Sparkplugs, and 1 EDSNZ Phone grip and 1 EDSNZ Lanyard from EDSNZ!

Thank you again to all our participants, we couldn’t have had such a successful May Awareness Month without you all. 

Prizegiving was done via WheelOfNames.com.

In total, through our communities’ various efforts to raise funds for EDSNZ we were donated the grand total of $4619! 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!

Performance Report 2021

Performance Report for Ehlers-Danlos Society New Zealand Incorporated, also known as Ehlers- Danlos Syndromes New Zealand.

Year ending 31 March 2021.

Full Performance Report available in PDF Here, with a preview of the contents below, alternatively you can watch our AGM here. Please feel free to leave a comment on this post if anything needs changing.

Contents

Non- Financial Information

  • Entity Information
  • Statement Of Service Performance

Financial Information

  • Statement Information
  • Statements of Resources and Commitments
  • Notes to the Performance Report

Entity Information

Who we are? Why do we exist?
…………………………………………………………………
Legal name of entity : Ehlers-Danlos Society New Zealand Incorporated
Also known as : Ehlers-Danlos Syndromes New Zealand
Type of Entity and legal basis (if any) : Non-Profit Charitable Society
Registration number : CC55826
Society number : 2704932
…………………………………………………………………

Enitity’s purpose or mission:

Our mission is to improve the wellbeing of those with Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders in Aotearoa New Zealand by raising awareness, improving knowledge by health professionals and providing support to patients.

Ensuring that medical professionals and patients have access to the correct information, and that patients are able to access support, and that patients know their rights and know how to advocate for themselves.

Entity Structure:

Ehlers-Danlos Syndromes New Zealand’s Leadership consists of the President, Secretary and the Treasurer. The Secretary position was reintroduced within this 2021 financial year. Our Committee size has fluctuated during this year. We had a total of 7 committee members at 31 March 2021.

The main Sources of the entity’s cash and resources:

This year we have received donations from fundraisers, personal donations, and as birthday donations, all of whom have been thanked for their donations. We have also done a merchandise-run of T-shirts, lanyards, phone-grips, cooling towels, coffee cups, and earrings. We have also connected with Techsoup to tap into their non-profit resources, have a Non profit discount with Xero, and have connected with Reward Hub after this resource became available since COVID-19. We also bought a supply of postage paid envelopes for our mail outs for awareness, which will hopefully supply us for a few years to come.

The main methods used by the entity to raise funds:

The main way we actively received money through our own efforts was through merchandise sales.

Because of this pandemic, it has been made blatantly clear where the holes are in the system, and in turn where improvements can be made. It is also shown us how accessible things can be made for us. We hear what our community needs are and we are joining with other communities to ensure our voices are heard. The accessibility that has opened up for us here in New Zealand, means that we have been able to join much more international conferences than we ever have had in the past.

– Kelly McQuinlan, EDSNZ President.

May Awareness Month 2021

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.


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

Images from our participants
Images from our participants
Images from our participants
Images from our participants
Images from our participants
Images from our participants
Images from our participants

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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!



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!