Ease The Squeeze Trust

Metabolic diseases are rare, complex to diagnose and can attack at any age. 

Some are treatable. Many are not.

None are curable.

These conditions are life-long, incurable and often degenerative.

Please help us Ease the Squeeze for Kiwi families coping with metabolic disease.

About us

Ease the Squeeze is a charitable trust that was established in 2015 by one of the metabolic nurse specialists at Starship Hospital in Auckland. 
Ease The Squeeze wants to lessen the financial pressures placed on families impacted by metabolic diseases - whatever the need is.

What is metabolic disease? ​

People with a metabolic disease have what is known as an "inborn error of metabolism" or IEM - a genetic disease caused by a defect in the function of a protein in the cell involved in the metabolism (breakdown) of a chemical in the body.

The diagnosis of a metabolic condition often means one member of the family must give up work. Reducing to one income can plummet them below the poverty line. In addition to the loss of an income, families also face an increase in costs associated with the illness.

• Pharmac does not fund some of the medications recommended for metabolic conditions. These can lead to a reduction in the speed of deterioration but are costly. For instance, a treatment for Pompe Disease is available but it is not funded. This slows the progression of muscle wasting, and delays having to rely on a breathing machine or  a wheel chair to mobilise.
• Cost of living in New Zealand has increased dramatically. Many families are living in cold, damp and uninsulated houses. This increases the risk of respiratory illness. A normal illness can worsen the condition resulting in an extended period in hospital.
• Children with metabolic disease are particularly fragile. Being able to reach the national metabolic team for advice and treatment options is essential. Access to a telephone at all times is critical but "top-ups" may not last between paydays.
  

How we want to help

The aim of Ease The Squeeze is to relieve some of these pressures placed on families by using the money raised to lessen the squeeze. This may be in the form of vouchers or bill payments, phone cards or parking vouchers. Perhaps providing the means for a family outing which will leave lasting happy memories for the family.

In the words of a person experiencing this:

"A day at the mall,  dinner out with friends and a night in front of the television watching bad movies. These are all things that at 31 I'm no longer able to enjoy.  At 28 , a tingling sensation in my toes was the start of a three year decline in my vision, hearing, digestion, balance....all due to a rare condition called mitochondrial disease. Three years of tests, waiting and not knowing....it led to the diagnosis of a non curable, non-treatable and highly unfunded condition that's altered my and my families lives forever. My body is like a house  - try to run a house with the power of one battery. It's never enough to run things properly."

Are you ready to Give-A-Little?

Please - if you can buy your friend a coffee, consider sharing one with our trust once a week and help ease the squeeze for a family in need. Your help will be enormously appreciated.

Give generously and help us ease the squeeze on families affected by metabolic disease.

Fundraising

Funds have been accumulated through

• generous donations from the metabolic community
  
• movie nights
  
• activities such as running a sponsored half and full marathon
  
• sale of cricket grips - used by members of the Auckland Aces cricket team
  

Link to Give-A-Little

Visit:
http://givealittle.co.nz/org/easethesqueeze to donate

Bank

Ease The Squeeze Charitable Trust
TSB Newmarket
 
15-3968-0038792-00

Contact

Easethesqueezetrust@gmail.com

Our facebook

https://www.facebook.com/easethesqueezetrust