Gibberish – Ehlers-Danlos Syndromes New Zealand

Ehlers-Danlos Syndromes New Zealand is a non-profit charity run by New Zealanders who have Ehlers-Danlos Syndrome. Our committee is made up of a President, Secretary, Treasurer and committee members. We are run by unpaid volunteers who work hard to raise awareness of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders on behalf of all those in New Zealand Aotearoa who are diagnosed, newly diagnosed, or on their journey to get a diagnosis. Because EDSNZ is a Non-Profit, and staffed by unpaid volunteers, we rely on donations, merchandise sales, and nationwide fundraisers to raise money to help support kiwis with EDS/HSD. We do as much as we can for free, but we also have many projects that need to be paid for from community donations, merchandise sales and fundraisers.

We have some amazing medical professionals who regularly help EDSNZ by creating lectures and doing seminars pro-bono in order to help get our costs down. The only costs associated with some of these lecture series as been a koha as a thank you gift from EDSNZ. These lectures and seminars are available in the Patient Support section of our website for free.

So where does the money that has been donated to EDSNZ go? Please read on below for more information about what has been done so far and what we plan on doing in the future. All entries have costs attached along with details about what donations and profits from merchandise sales and fundraisers have been spent on.

2023

Medical Professional Mail-Out- $1000

Current Project - Follow Up Mail-Out

A mail-out to medical professionals across the country. This project is partly a follow up to our 2020 mail-out, to invite medical professionals to join EDSNZ to stay up-to-date on EDS/HSD information, but also partly a reminder of the diagnostic criteria and that anyone can diagnose EDS to help familiarise medical professionals with connective tissue disorders. The hope behind this is that with more awareness, the earlier signs of EDS/HSD will be detected which will lead to earlier treatment and prevention for community members going forward.

2023

Newly Diagnosed Book - $4000+

Current Project - A Newly Diagnosed Book

A project we are currently working towards and actively fundraising for is the costs of publication of a book designed to help the newly diagnosed navigate their diagnosis and the unique medical system here in New Zealand.

Something we hear time and again from community members is the sense of feeling lost upon diagnosis by a specialist. The medical profession in New Zealand is very behind on awareness of EDS which leaves newly diagnosed EDSers feeling like there's nowhere to turn to easily get information on their diagnosis and what to do next. We hope our book will fill in this gap and leave our newly diagnosed members feeling less confused and lost.

This book is not just aimed at the newly diagnosed though, as it will also have information helpful to those on their diagnosis journey, as well as those who have been diagnosed for quite some time.

This is probably one of EDSNZ's biggest projects to date, and will take us a few years of targeted fundraising to bring it to life. All donations help us get there a bit sooner.

2023

Childrens Book - $1000+

Current Project - Children's Storybook explaining EDS and HSD

EDSNZ have been working on a childrens storybook for the past 3 years, writing and illustrating an easy-to-read book explaining eds and chronic pain in broad terms. The idea behind this project is to help children who have been diagnosed with EDS, HSD or other chronic pain conditions understand what is happening with their bodies, as well as helping them explain it to their friends. This will also hopefully be a great resource to explain to children who have a loved one who is affected by EDS.

This is one of our long-term projects that we will be working on targeted fundraising to achieve.

2023

EDSNZ Informational Pamphlet - $500+

Current Project - Informational Pamphlet

This year we we completed work on creating an easy-to-read pamphlet about EDS and HSD. Currently this pamphlet is available to downloaded for free on our website. We are working towards getting these printed so we can hand them out to medical offices around the country.

The ultimate goal with this project is to have it available in every medical centre, hospital, and medical providers offices around New Zealand alongside other charities informational pamphlets. This will be an ongoing, long-term project as we work towards making this happen, and printing new batches when money is available.

2023

International Conferences Attended - $105 (so far)

International Conferences Attended Virtually

EDSNZ commitee members attend international conferences hosted by Ehlers Danlos Society (US) via zoom calls. This helps EDSNZ keep up-to-date with the latest information about EDS/HSD so we can keep our website up-to-date and pass on knowledge gained at conferences to interested medical professionals.

2022

Website Redevelopment - $100

A Redesign to help with Accessibility

Towards the end of 2022 we redeveloped our website at the same time as migrating it to a new host so that we could grow our website even further. The prompt for change was to move our website to being accessible for everyone, and our new design allowed for screen readers to easily pick up information for our low vision and vision impaired community members. A fresh look was also developed to help those with reading issues be able to follow information easily.

This involved purchasing a new theme that would help fix the accessibility issues of our previous layout, with a one-off charge. The rest of the work was undertaken by committee members, and a volunteer IT expert who put in hours pro-bono to migrate the website.

2022

Knowing Your Rights - $40

Health and Disability Commision - Knowing Your Rights Pamphlet

As part of an awareness campaign EDSNZ put together on Knowing Your Rights, we purchased a supply of "Knowing Your Rights" pamphlets and wallet cards. These are to help our community know what their rights are while receiving medical care, knowing when their rights have been breached, and how to go through the complaints system when their rights have been breached.

Along with having the pamphlets in stock which are sent free of charge to anyone who wants them, we worked on adding a section to our website breaking down what each right is and how it pertains to all New Zealanders, as well as creating an online seminar to help New Zealanders get the most out of their doctors appointments. This seminar is free to watch in our resources section.

2022

International Conferences Attended - $200

International Conferences Attended Virtually

2021

Medical Documents Translation

Te Reo Translations

A big part of EDSNZ's goal is to be as accessible as possible. As such one of our large goals was to get some of the EDS medical texts translated into Te Reo. This was a large undertaking for EDSNZ, and took several years to bring to fruition.

In order to complete this goal we had to undertake targeted fundraising, and we held our first nationwide fundraiser during May Awareness Month to raise the funds to help cover the costs of the translation. It ended up taking us two years of fundraising (2021/2022) to pay for it, but we got there. The translation is currently on our Medical Professionals page for any medical professional to use for free.

2021

Kevin Muldowney Books purchased - $180

Living Life To The Fullest

EDSNZ purchased two copies of Kevin Muldowney's (PT) Physical Therapy Protocol book "Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS". These are available to loan for free for any medical professional who wishes to use it for physical therapy for EDS/HSD patients. We loan these out on a regular basis, and it is helpful to EDSers to have a guided physical therapy protocol to follow.

2021

International Conferences Attended - $393

International Conferences Attended Virtually

2020

Mail-Out to Medical Professionals - $875

Our First Major Project

In 2020 EDSNZ did two mail-outs to Medical Professionals around the country. This mail-out targeted professionals who were suggested as being helpful to people within our community, as well as a list of doctors who had referred patients for an EDS diagnosis.

We were able to send our awareness letter to 625 medical professionals. This also came with an invite to be able to join us and receive information from us going forward.

2020

Zoom Subscription - $107

Support Calls Start

With the 2020 Lockdowns, EDSNZ purchased a Zoom Subscription for one year to put on support calls for community. These support calls became an ongoing support system for many of our community, giving people a safe space to socialise and talk through issues they may have with people who are in similar positions.

Due to the popularity of these calls, when our years subscription was coming to an end, we moved to Google Meet as we met the criteria for a free subscription as a charity. This saved us money for larger projects, while keeping the same level of support, and adding to our support services.

2020

EDSNZ Attends International Conferences - $420

International Conferences Attended Virtually

EDSNZ starts to attend international conferences hosted by Ehlers Danlos Society (US) via zoom calls. This helps EDSNZ keep up-to-date with the latest information about EDS/HSD so we can keep our website up-to-date and pass on knowledge gained at conferences to interested medical professionals.

2019

Merchandise - $1200

Merchandise

As part of setting up, merchandise is purchased to sell to fund ongoing website hosting and xero accounting software. Merchandise is advertised on the website, and orders are taken by email with an invoice created in xero, sent to the customer for payment, and payment options include pay via bank transfer or polipay.

Donations fund the initial setup costs for purchasing EDS branded Lanyards and Phone Grips in bulk, along with limited edition T-Shirts. Donations also fund purchasing Zebra-Striped Ribbon to make awareness pins, which are sent out to EDS Specialists to be given to EDSers for free.

2019

Start Up Costs - $350

EDSNZ Website

EDSNZ (Then known as Ehlers-Danlos Society New Zealand Incorporated) continues with start up costs of the society and creates the ehlers-danlos.org.nz website to help get information about EDS out to the community for free. This is funded by donations from the EDS New Zealand Community.

Start up costs include Domain Name for Website (ehlers-danlos.org.nz) and Website Hosting with a WordPress Theme. Common Seal Stamp, Society Incorporation Fees, a bare minimum of office supplies. Set up and ongoing costs for Xero Accounting to ease workload and create easy transparency for Annual Reporting, Polipay set-up costs to start selling merchandise in the hopes that this will pay for ongoing website costs and accounting costs.

2018

Start Up Costs - Deferred to 2019

Ehlers-Danlos Syndromes New Zealand Is Born

Ehlers-Danlos Society New Zealand Incorporated becomes an incorporated society and is registered with Charity Services NZ. Founded by Kelly McQuinlan and Stephanie Aston, with a president, secretary and two committee members. Bank Account is opened to start taking donations.

Along with the projects and costs outlined above, we also have regular payments going out.

Yearly

Website Subscription Costs - $300

EDSNZ Website

Our website is the first port of call for those who are on their journey to diagnosis. It lets people know they are not alone, and offers support for those looking for answers. It also helps medical professionals when faced with a patient who is looking into an EDS diagnosis by having free information about what EDS is and how they can see if their patient might have EDS/HSD.

We work hard to provide free resources for publication on our website to help everyone no matter what stage they are at on their EDS journey.

Our yearly subscriptions pay for website hosting and our domain name which also covers all official email addresses for Ehlers-Danlos.org.nz. Our website payments are covered by donations from our community as well as our nationwide fundraising events.

Yearly

Xero Accounting Subscription - $500+

How does a Xero Accounting Subscription help EDSNZ support Kiwis?

We maintain a Xero Accounting Subscription. The reason for this is so we have a transparent way of keeping track of EDSNZ's incomings and outgoings for our yearly AGM and Charities Services reporting.

It also frees our volunteers up timewise so they can concentrate on the things that matter most - keeping the website updated, working on awareness campaigns to help EDSers get better treatment, work on free resources that will benefit our community, and most importantly give our volunteers the time needed to support our community such as regular monthly in-person meet ups, providing support through our free online support groups, and support via online video calls.

So now that you’ve seen what donations, merchandise and fundraising events pay for, please consider supporting EDSNZ to help us cover the costs of projects and our yearly subscriptions.