+6421763259
EASE THE SQUEEZE TRUST
WHO WE ARE
Ease the Squeeze Trust is a registered charitable trust established in 2015 by a team passionate about helping individuals and their families live better lives with a metabolic diagnosis.
WHAT ARE METABOLIC DISEASES?
Metabolic diseases are complex, rare, genetic (inherited) diseases which result in the body’s inability to break down chemicals or produce energy for the cells of the body to work properly. When the factory of our body starts to malfunction and there is a build-up of chemicals or not enough energy, the cells of the body start to become damaged and die. Examples of these are mitochondrial disease, PKU, Hurler disease, Fabry disease, Pompe disease, and so many more.
Metabolic diseases can occur at any age, from the newborn period right through to late adulthood. They can affect any organ system at any age, depending on the disease. The severity and impact on people’s lives can be variable. Completely “normal” people can start to lose skills, family start to notice changes in their behaviour, lose hearing or vision, they may become weaker, or develop liver, heart or kidney disease. As these are genetic conditions, they can affect the whole whānau, with siblings and parents becoming unwell due to the condition, adding additional strain.
Metabolic diseases are individually rare but collectively common. The rarity makes them difficult to diagnose, difficult for people to understand, including for your doctors and nurses, and the journey for patients and whānau can be complex. Some are treatable with diet, others with complex medications, many of which are not funded in New Zealand, or with organ transplant. Some of our patients can only get access to therapies through clinical trials. Many however are not specifically treatable, except with supportive care.
The first metabolic disease was described in 1908 by Sir Archibald Garrod. Since then, the number of known diseases has exploded to many hundreds of different diseases all falling under the umbrella of Metabolic medicine. Metabolic medicine is a constantly evolving field because of advances in the way these diseases are diagnosed. However, as the disease numbers grow, so does the need.
People with these disorders in New Zealand are cared for by the Adult and Paediatric National Metabolic Service, a multi-disciplinary team who care for each person individually across New Zealand.
We, together with some of our wonderful whānau, recognise the huge unmet need, and the impact of these disorders on the wider patient community. We have set up this trust to help meet some of this need.
That is where you come in.
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HOW DOES EASE THE SQUEEZE HELP?
Due to the typically progressive nature of the diseases, and the increased levels of care required, families are often forced into a spiral of poverty because of reduced income, the stress of a chronic disorder and living in conditions which reduce the health outcome for the patient.
HOW DOES EASE THE SQUEEZE HELP?
Ease the Squeeze assists families by contributions to the things they need. Whether it be vouchers for healthy food or paying a power bill, prescription or GP charges, some clothing or blanketing, supplying efficient heating, assistance with funeral costs – or more recently, a donation towards new tires for a mobility van!
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HOW DOES EASE THE SQUEEZE HELP?
Each of the metabolic families needs are different and this charity is willing to help to make that financial burden a little less in anyway we can.
HOW DOES EASE THE SQUEEZE HELP?
We are here to ease the squeeze!
Anyway we can.
Every little bit helps.
HOW HAVE FUNDS BEEN RAISED PREVIOUSLY?
We have done many great fundraisers:
The obligatory sausage sizzle!
Marathons and half marathons have been completed.
We have joined for movie nights at the Rialto theatre for movie nights.
Regular donations from awesome and incredibly generous people.
Ease the Squeeze Trust has designed and sold cricket grips.
We have had chocolate and wine sales to boost the bank balance.
HOW CAN YOU HELP?
Get involved!
Get fitter and join us on one of our walks and runs.
Come see our annual movie fundraiser.
Donate to our Give a little page.
Donate directly to our trust account.
In 2024 and 2025 we will:
Hold the annual movie night at the Rialto in Newmarket.
Have Sausage Sizzles at Mitre 10 Mega in Mt Wellington.
We will be working with Whittakers fundraiser and selling chocolate.
And for Christmas we will be selling the perfect Secret Santa gift!
This year we are trying to improve on what has been done before and branch out.
We would love from you with suggestions of groovy ways to raise money for our families so please get in touch with your ideas for fundraising.
DONATE NOW
Donate at our Give a Little site here.
Or direct debit to our New Zealand bank account:
TSB: 15-3968-0038792-00