It is estimated that at least 25,000 people in Aotearoa
have Myalgic Encephalomyelitis, also known as Chronic
Fatigue Synrome (ME/CFS). A new fund to support people
experiencing this condition is being launched in Nelson this
month and the organisers hope to raise $50,000 to kickstart
their efforts.
The ‘Zest
for Life Fund’ has been established in the memory of
Zascha Mann, a young Nelson man who died in
July 2021 as a result of a long struggle with this
debilitating condition. The name Zest for Life was chosen in
recognition of Zascha’s exuberance for life as an
adventurer, traveller, skier, mountain climber, and
kayaker.
In Zascha’s moving departure message he
said ‘being stuck in bed 24/7 is hell for me.’ He
went on to finish his message with these thoughts;
‘Firstly, I encourage you all to fiercely be your
authentic, wonderful, weird selves. The world needs more
authentic humans. Secondly, please do what you can to make
the world a better place, it needs people to fight for
it.’
Nelson woman Angela
Palmer, who has helped form the Fund, said that it
was those final words from Zascha that made her determined
to do something to help others with
ME/CFS.
‘Zascha’s death must not be in vain. We
must ensure that these people, lying at home in bed, often
isolated and unable to summons the energy for even a phone
call or email, let alone being functional enough to cook a
meal, are fully cared for. As a society we are letting these
‘hidden people’ down. If we can make any difference in
improving the lives of people like Zascha, and their
dedicated carers, then we simply must’, Palmer
says.
ME/CFS is considered a major disease we know
very little about; much more research needs to be done and
there is a serious lack of funding around this. And the
severe patients, like Zascha, have desperately difficult
lives.
The Zest for Life Fund is being run through the
Top of the South Community Foundation, and will provide
small grants to be used for predominantly practical
help enabling enhanced wellbeing and reduced daily
living pressures, and/or opportunities for respite for those
with Chronic Fatigue, and their carers, in the Nelson and
Tasman regions. Donations to the fund will go directly to
the Foundation and then be invested.
Palmer believes
people with the condition often feel like they are a burden
and asking for help can be a barrier to getting relief. The
small cash grants could be used for such things as
assistance with driving to appointments, help with
housework, cooking and advocacy, or respite care. It is
believed to be the first community fund in New Zealand set
up with an explicit purpose to help provide such practical
care.
The fund is being launched near the Maitai River
in Nelson where a plaque will be unveiled in Zascha’s
honour. Guests are advised to wear gumboots and will be
serenaded by a saxophone with cows probably in
attendance.
The ‘Zest for Life Fund’
Launch:
Date :
Saturday August 27th
Time:
10-11am
Location : Maitai
Valley
Meet as a group at the carpark of the
Maitai cricket ground at 10am. Its on the left, opposite the
farmhouse, after Black Hole and before Sunday swimming hole.
It is a 10 minute walk along the river to a special spot
where Zascha’s ashes have been spread and a memorial
plaque has just been placed on a bench. This plaque will be
unveiled by Miriam Gratton,
Co-ordinator/Advocate for the Nelson Bays ME/CFS & FM
Support Group.
**The track is muddy.
Please wear good walking shoes or gumboots if it has been
wet.**
** Wet weather back up venue – FAIRFIELD
HOUSE**
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