“My mother started to suffer from multiple sclerosis, but nobody knew what MS was then. My father didn’t – and later he suffered a great deal of guilt over that. It was an awful business and very fraught”.Ruth Rendell
I was talking to someone today who was diagnosed with MS in 1999. When she was told she had MS she thought it had something to do with Microsoft! She knew nothing about multiple sclerosis and when she asked the neurologist who diagnosed her what it was, she was told ‘we don’t really know much about it but there is no cure and no medication and gradually you are going to get worse and end up in a wheelchair’.
The good news is she is not in a wheelchair. She did receive medication eventually and made lots of positive lifestyle changes with diet and exercise. The one thing she did receive was a flyer on MS Auckland. She joined the community right away and is so grateful for the support she has received over the years.
This story, however, does show how far we have come in understanding MS. While there is still no cure, thanks to research all over the world we are gaining a far better understanding of the condition. People diagnosed today receive far more options for treatments to support them in keeping well and delaying or even preventing progression.
Research day is a very popular event in our calendar. This year for the first time we are very pleased to have the NZ MS Research Trust coordinate the event, which will once again be held at the Alexandra Park raceway in Epsom. Find out more about this very special event and other happenings coming up in this month’s newsletter.
In this newsletter:
1. Research Day – Saturday 2nd November
2. Newly Diagnosed Seminar
3. Future Services – Planning underway!
4. Wellbeing workshop for Carers
5. Oceans of Hope
6. Thank you!
1. Research Day – Saturday 2nd November It’s here! Research Day 2019! This year’s Keynote speakers include Dr. Suzi Claflin, from the Institute of Research at the University of Tasmania, and Dr Ernie Willoughby, MS specialist neurologist. Other speakers include: Fiona d’Young, MS Nurse; Dr Justin O’Sullivan, Associate Professor and Associate Director for Research at the Liggins Institute; Dr Scott Graham, Senior Lecturer and Senior Research Fellow at University of Auckland; and Gilly Davy, Neurophysiotherapist, Connect Neuro Rehab.
Details of the event are as follows:
Date: 2 November, 2019
Time: 10:00 am to 2:45 pm
Venue: Alexandra Park, Epsom, Auckland
Cost: A recommended $10 donation at the door
A healthy morning tea and lunch will be provided. Car parking is available onsite. This year the event will also be live-streamed, so you will be able to watch the event from anywhere with an internet connection.
To find out more about the speakers and the topics that will be covered and to register click this link: https://www.eventbrite.co.nz/e/multiple-sclerosis-research-day-2019-tickets-74215224735
This event will book out. If you wish to attend please be sure to register early to avoid disappointment.
2. Newly Diagnosed Seminar If you have been diagnosed with MS in the last year or two and have not attended a newly diagnosed seminar in the past, you will receive an invite to attend this years seminar on Saturday the 19th of October. Invites will be going out the first week of October. If you don’t receive an invite, and wish to attend please e-mail firstname.lastname@example.org or call the office on 09 845 5921.
3. Future Services – Planning underway Thank you to everyone who responded to our survey to help us in our planning for future services. 186 surveys were completed and sent in. The winner of the $100 voucher will be announced soon.
We will be carefully analyzing the survey responses and will be feeding back to you what we have learned in our next magazine due out in November. Your input is so valuable and so important to ensure that we continue to keep up with what’s important to you and to enable us to provide services that meet your needs.
4. Wellbeing Workshop for Carers – Saturday 16 November – Presented by Louise Thompson
This workshop is being brought to us by Dementia Auckland. It is for anyone sho is supporting someone with dementia or other neurological conditions, or is taking care of someone experiencing an illness.
Supporting and taking care of others can at times be stressful and overwhelming and can limit opportunities for self-care. This workshop will provide you with tools and techniques for looking after your own needs. It starts at 10:30 and finishes at 1pm. The entry fee is $30. To attend please register here.
5. Oceans of Hope 2- 6 December
Oceans of Hope is back in New Zealand at the end of the year. http://oceansofhope.co.uk/challenge/news/2019/ooh-announce-new-zealand-return/
This is your chance to be part of the crew sailing around the Hauraki Gulf, departing from and returning to Auckland. There are still a few spaces left. For more information check out the Ocean of Hope Website.
6. Thank you!We are so grateful to everyone that contributed to last month’s very successful awareness and fundraising events.
The month started with our Movie event, organised by Fran Watts. The little theatre was sold out and everyone enjoyed watching ‘The Farewell’. Almost $1,400 was raised.
This was followed by Sam Smith’s comedy night at The Classic Comedy Club. A fantastic line up of all-star comedians performed to a full house. TV 3 The Project came on board to assist us in raising awareness by following Sam Smith’s story of MS. Some of the evening events was filmed and aired the next night, with Jeremy Corbett also asking people to use our Text to Give service to donate $3 to MS Auckland. If you didn’t see this you can watch it here: https://www.facebook.com/TheProjectNZ/videos/387578895213518/UzpfSTc3MTI4OTg1Mjg4NjU3NDoyOTgxMDAzMzQxOTE1MjAz/
Our Street Appeal this year took place in just 13 sites over 3 days. This is a far cry less than in previous years and was due largely to the seeming lack of interest in Street Appeals in Auckland. Supermarkets have started closing their doors to allowing collectors outside and volunteer collectors are getting harder to find. However, the support and volunteers we did get were amazing. The winning site in terms of money raised was the New World at Stonefields, which was organised and run by the St John’s Rotary Club. They brought in $4,844 over the 3 days! A fantastic effort!
And finally, our Text to Give campaign which finished 30th of September. This was our first year trying this out. It was prompted by the growing number of people who don’t carry cash for our Street Appeal. People seemed genuinely grateful for the option to text through their donation, with some people doing it as they stood alongside us. It was the big push on TV which really helped to bring the texts in. We were aiming for 1500 texts and a final push saw us go over the line making 1533!
I couldn’t possibly name all the people who contributed to making September such a wonderful month for MS awareness and fundraising. You know who you are and hopefully, you also know how special you are to us. Big hugs and a big, big thank you!
Things aren’t slowing down for us as we enter the last quarter of 2019. We always welcome your phone calls, e-mails and feedback and love hearing from you.
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Until next month,