Given the current situation we’re taking MND week online!
MND Week is celebrated nationally in the first week of May (this year it’s the 3rd to 9th May 2020) to raise awareness of the needs of people living with MND and their families. It’s a time to acknowledge the MND community and people living with MND today and to remember those who have passed. This year, while we can’t run any face to face events, we have a bunch of virtual ways to get involved (some yet to be announced) and more than ever, we really need your help to get the word out there.
Cornflower Blue Day
Usually, over the course of the week we run a heap of events that culminate in Cornflower Blue Day that will take place this year on Friday 8th May.
The blue cornflower was adopted as the national symbol of hope for MND, because of its fragile appearance but hardy nature. Like the cornflower, people living with MND show remarkable strength in coping with this devastating disease.
This year we’re launching a new online platform where you’ll be able to plant a virtual cornflower for a loved one who is living with motor neurone disease (MND) or in remembrance of someone who has died. This will create a virtual Cornflower field that will act as a beacon of hope for the MND community and while we can’t say much more about it yet, we’re excited to launch this platform!
Day of Hope and Remembrance (DOHAR)
The Day of Hope and Remembrance is one of the most moving and impactful events we run each year, celebrating the strength of people with MND and remembering those who have passed. This year, we’re taking the event online and are excited for what we’ve got planned. Stay tuned as we’ll be announcing this new event soon and it won’t be the same without your involvement!
Merchandise (e ) Stalls
Usually we sell a range of merchandise at stalls set up in shopping centres and train stations all around NSW and the ACT. This year you can still get involved by buying (and encouraging others to buy) our merchandise online!
These are our fave picks of merchandise to survive these new conditions:
- Our exercise tights which are back in stock! They’re the perfect social isolation get up allowing you to transition from the couch, to your video call (let’s face it none of us are wearing ‘professional’ bottoms under our home office desks) to your supermarket run. They’re not only stylish by oh-so-comfy.
- Our super cute MND NSW Puppies! Don’t go it alone. Instead, spend some time with one of these cuties. They’re THE best self-isolation companions as they’re cuddly, quiet, don’t use much toilet paper and are 100% immune to COVID19. We’d love to see pics of you and your puppy hibernating in these crazy times so don’t forget to send us your snaps.
- Our stressballs. We wholeheartedly approve of your panic buying of these to get you through this stressful time and incidentally improve your grip strength!
Why should you support MND NSW during MND Week?
MND NSW is the only organisation in NSW and the ACT supporting people living with all types of MND, their families and carers. We advocate on behalf of people with MND, loan specialised equipment including electric wheelchairs, communication devices, electric beds and walking frames, provide education, workshops and seminars as well as raise funds for research.
This year, we’re again focusing on the theme, Make Aged Care Fair, taking it one step further and asking for your help to end age discrimination for people living with MND.
Research shows that 50% of people with MND are diagnosed when aged 65 and over. Currently they do not have access to the National Disability Insurance Scheme (NDIS) and must rely on Aged Care services for disability care and support. It means they are pushed into financial hardship and have fewer options for support.
People living with MND aged 65+ endure long waiting lists for disability care that often can’t meet their needs. Many die before they receive help.
It’s why we’re committed to providing people with MND aged 65+ with the equipment and services they need free of charge. But ultimately, what we really need is to end age discrimination for people with MND for good.
How can you get involved?
This year more than ever we need your help. Some ways you can get involved include:
- Buy our amazing merchandise
- Donate online
- Advocate on behalf of people with MND aged 65+ by writing to your local member and/or the Assistant Minister for Disability Services the Hon Jane Prentice MP
- Sign the MND Charter of Rights of All People Living with MND
- And don’t forget to stay tuned for more info on our Virtual Cornflower Platform and Virtual DOHAR event!