Getting by with a Little Help from their Friends
For Immediate Release
Tuesday, 3 October 2006
Getting by with a Little Help from their Friends
Sovereign Spirit enables Wellingtonians to deal with life threatening illness with more peace of mind
Wellingtonians suffering from rare and crippling Lysosomal diseases are no longer fighting their battle alone. A contribution of more than $12,023 from Sovereign Spirit - the unique sponsorship initiative run by Sovereign - will enable 22 families in the Wellington region to build a meaningful support network.
There are 40 varieties of Lysosomal disease, a degenerative disorder that can affect both children and adults. Most babies appear normal at birth, but symptoms progressively worsen and can vary from bone deformities, joint stiffness and mental retardation to loss of speech, sight and hearing.
Every cent of Sovereign's contribution will directly benefit Wellingtonians, and their families, who deal with the disease.
"Through Sovereign Spirit, they no longer have to worry about fighting their battle alone because we're now able to help support and care for them, and build a strong network of families around them," says Jenny Noble, Secretary for the New Zealand Lysosomal Storage Diseases Support Group.
"The pressure and hardship for those families who have relatives suffering from these diseases is immense and often unimaginable. Coming to grips with the fact that your baby, parent or sibling is dying from a crippling disease is hard enough to deal with, never mind ensuring that they are comfortable and cared for," she adds.
One such sufferer is a young, bedridden boy named Tasman, who must be tube-fed by his struggling mother and 71-year-old grandfather. Tasman has a disorder known as Metachromatic Leukodystrophy, a terminal condition that will eventually lead to a complete failure of his nervous system. His brother also suffers from this illness and his future does not look good, having already had two failed bone marrow transplants. In addition, his family has used up their quota of nursing support hours provided to them by the health system and is in desperate need of support.
Through the support group, sufferers and their families can access the latest information, connect with the right health services and gain additional in-home nursing hours, as well as talk to and meet other families dealing with the disease. For Tasman's family this means more free nursing hours, providing his mother and grandfather some respite.
One of the main initiatives Sovereign's support will contribute to is a series of family meetings in Wellington to enable the families to connect. The funding will also help 2 young adults with Lysosomal diseases attend a conference in Australia at the end of this month.
John Forman, Chairperson for the New Zealand Lysosomal Storage Diseases Support Group, says that Sovereign Spirit's contribution is the first and most significant corporate grant they have received specifically toward helping the people they work with. In the past, they have found it difficult to gain funding and have usually only received grants for administration and the overall running of the Support Group.
"When we first formed LDNZ in 1999 our bank balance was $200. Now, Sovereign has enabled us to go forward with confidence knowing that we are helping those people that really need it," says Mr Forman.
Mr Vena Crawley, Head of Marketing and Product Management at Sovereign, says Sovereign is humbled by the work the Lysosomal Storage Diseases Support Group does in Wellington and is encouraged by their personal approach to helping people with the disease.
"Sovereign Spirit is about uncovering not-for-profit organisations that make a personal difference in enabling New Zealanders to live happier and healthier lives. The New Zealand Lysosomal Storage Diseases Support Group exemplifies this and is founded on a true passion to help those dealing with such difficult times," concludes Mr Crawley.
About Sovereign Spirit
Sovereign Spirit is a unique sponsorship initiative where employees at Sovereign get the chance to select 12 different non-profit organisations working in health and wellbeing across New Zealand in a calendar year.
Each month, Sovereign Spirit moves around the country to a new region calling for non-profit organisations to put their names forward. The final decision on which organisation is supported each month is made by Sovereign employees, who take part in an online vote. Once a non-profit is selected, Sovereign employees get behind that cause by raising funds and dressing in smart-casual on Spirit Day. As well as providing a $10,000 contribution, Sovereign matches each dollar donated by staff on Spirit Day. In 2006 Sovereign Spirit will be supporting 12 regions in New Zealand, with two in the month of May.
To date Sovereign has supported 19 non-profit organisations across New Zealand through the Sovereign Spirit sponsorship, with a total contribution of over $220,000. For more information on Sovereign Spirit please visit: www.sovereign.co.nz/section226.asp