yes the email has changed
Myasthenia Gravis Support group
Myasthenia Gravis Support Group
Contact person = Talitha Vandenberg 0272203138
Facebook = Myasthenia Gravis Support group, New Zealand
Website = myastheniagravisnz.wordpress.com
AIM:
To provide support to people with Myasthenia Gravis,by offering information and education for their friends/family and carers. This helps everyone understand what MG is and supports how to live a full and inclusive life, managing all the ups and downs with MG.
Myasthenia Gravis support group facilitates a place where people with MG can meet, talk, share experiences and swap information with people who understand. Addressing and illuminating the overwhelming isolation of sufferers from the mainstream society.
OBJECTIVE TO:
To support people with MG, by providing information and a network support to each other.
To provide a place to meet and build networks with other people who have Myasthenia Gravis
Coordinate a committee to support the development of the group
Provide face to face meetings and support via web, telephone, and letters /cards.
Provide comprehensive information packs to distribute to all who require them/one including key-rings, sweatshirts etc
Publish and distribute an annual newsletter
Raise funds to support the group – Myasthenia Gravis Support Group 02-0724-0046389-000
Increase awareness of Myasthenia Gravis amongst general public and do something special for the annual MG awareness month in June of each year.
Purpose of fundraising
Materials to develop information packs on Myasthenia Gravis for distribution eg; written material, ink, printing, postage, paper T shirts/sweatshirts – Printing/embroidery
To offer personal support to members with the consensus of the committee, subject to personal circumstances .
Travel & accommodation – when one to one visits are required/ getting to meeting.
Develop pamphlets and trinkets i.e. Key rings, magnets, t’shirts, sweatshirts, hats, pens for MG awareness.
Goals
To visit all group members
Acquire more resources and expand selection
Develop and produce a DVD about MG in NZ
Donations – BNZ 02 0724 0046389 00
If you would like to help support the Myasthenia Gravis support group please feel free to make a donation, 100% of your donation will be used to directly help people with MG.
If you cannot donate money but you would be willing to give of your time that would also be welcome. It may be making little crafts like fridge magnets or if you have a talent in embroidery and would be willing to donate some time and cotton.
The Hourglass
Imagine your day like it is an hour glass you only have some sand to use but every time you do anything like walk or cook or even talk the hole opens up and lets more sand through, and when you know that you will have to hang washing or lift anything the sand seems to escape even more. When you take pills once a day you get some more sand but if you are empty it will take a few days to build up sand.
So you have this hour glass and each time you move sand is wasted and that’s about it really – once its gone its gone, and you can’t move.
Welcome
Welcome to this support group for anyone who wants to chat about MG
Myasthenia Gravis Support Group NZ 