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AUGUST IS GLOBAL GASTROPARESIS AWARENESS MONTH


In acknowledgment and recognition of all the people who have had their lives forever

changed by Gastroparesis.

It's been three years since Ruby died from Gastroparesis. She is so loved and so missed.

Since establishing Ruby's Voice Trust we have been looking at how we will contribute to

raising Gastroparesis Awareness and be an effective part of the much needed changes.

We have received many emails of support via the Ruby Voice website.

Especially rewarding are the ones from fellow Gastroparesis Warriors who have shared their

similar stories, saying they have felt less alone and validated by reading Ruby's experience..

Living with the symptoms of a chronic illness, struggling to receive a diagnosis and finally

upon getting one, being told there is no cure is an exceptionally tough life to live.

There are just so few tools in the tool box to help sufferers of Gastroparesis. It's often a

process of seeing multiple specialists ,who work only in their area of expertise. This leaves

the different areas of the digestive/intestinal tract being dealt with in isolation to each

other.

This Latest News is likely to change that!

An illness such as Gastroparesis which affects digesting food, the core of our wellbeing,

disrupts life on so many levels. Not only physical health, mental health ,emotional health,

but also social interactions, family relationships, friendships, and the ability to work. Unlike

many Chronic illnesses, because little is understood about it, it involves not being able to

eat without vomiting the easiest explanation is “all in the head’ and ‘causing it yourself’.

They are literally starving ,as Ruby was, and are dismissed without understanding, empathy

or compassion.

Today I was laughing with a friend about their "hangry" behaviour...over missing one

meal....I was brought back abruptly when I thought how we all know someone who gets

'hangry' and can laugh about it but those with Gastroparesis can’t..

There are many moments of reflection like this which continue to motivate me on this

journey....

LATEST NEWS


A few weeks ago I visited the Auckland Bioengineering Institute (ABI) at the University of Auckland. There I met Dr Tim Angeli-Gordon who has been working on developing a diagnostic tool to help people specifically with Gastrointestinal disorders.

Early diagnosis is essential to the patient for treatment pathways and this will have a profound effect on the future of Gastroenterology.


It was the most hopeful experience I have had since Ruby first became ill. I am so excited to have had this opportunity. It is very exciting that this type of cutting edge research and development is happening in New Zealand! Gastroparesis is also frequently associated with comorbidities such as Diabetes and Ehlers Danlos syndrome, so many people will benefit from this research at ABI both in NZ and globally.


I met with Dr Tim Angeli-Gordon to learn more about the innovative work that he and his team are doing. It was inspiring to say the least. I am very grateful to Tim for sharing time with me to discuss this work, share Ruby's story and to discuss how we might partner together in the future to support each other's visions. The other Trustees are looking forward to their visit of ABI shortly.


Tim and his team of PhD students are developing an Endoscopic tool that will map and model the electrical control of the stomach and pylorus in 3D, and measure the areas of inactivity. Once fully developed, this diagnostic too will be made readily accessible to medical practitioners.


The work Tim's team is doing aligns with the Purpose and Objectives of Ruby's Voice Trust and we have chosen to establish a scholarship for a PhD student with Tim and his team.

One of the important objectives of Ruby's Voice, something she was very passionate about, was Research and Development. With this in mind we now need your help to raise the funds to support the establishment of this scholarship. The scholarship will be named for Ruby’s Voice Trust.

HOW RUBY'S VOICE TRUST WILL BE INVOLVED

We have an awesome opportunity as a community to create a partnership to support the future of Gastroparesis research!!

Ruby's Voice Trust would like to fulfil its objective of supporting Research and Development by fundraising to raise enough funds to create a Scholarship to support a PhD student working with Dr Tim Angeli Gordon, for a 3 year period.


Our long term goal is to be associated and supporting beyond the 3 years. We have the opportunity to be involved at the grass roots phase of development of a potentially life changing diagnostic tool.

Having a specific purpose to fundraise towards, which will have tangible outcomes and something we are confident aligns with the objectives of Ruby's Voice Trust, we have confidence in asking for your support.


There is a multi-pronged plan for fundraising;

Donations – Any amount received is much appreciated.


Payment to Ruby's Voice Trust Non-profit organisation.

Account. 02 0336 0060322 00 . Receipts available for donations.


Funding applications - Applications to community funders – There has been limited

access in Covid times.


Events - February 2023 -More details to follow!


Thanking you all for your continued love and support.

A big thank you to Ruby's fellow Gastroparesis Warriors who continue to share and support us. You are my inspiration and may we together, keep raising awareness!!


If you would like to get involved, or would like any further information please email


The Green heart and green ribbon are symbols for Gastroparesis

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