A Look at Helpful MS Charities
Forgive me for getting political for a few moments, but to understand the need for multiple sclerosis (MS) charities I think we need to consider the economic and financial state of the world.
I live in the UK, and the recent Brexit disaster (in my opinion) seems to be giving the government even more excuse to cut public spending and squeeze every last penny out of ordinary people. The economic uncertainty seems to be echoed across the Atlantic as Americans prepare for their own political upheaval in 2017.
What does this mean for those of us with a chronic health condition such as MS? It seems to me that we have to rely on charities to provide information, support and much-needed research funding rather than expecting our governments to look after us.
This isn’t such a bad thing, though, given how tirelessly charity organizations are working behind the scenes on our behalf.
Here are just a few that I’ve used since my diagnosis in 2008:
MS Trust (UK)
Website: www.mstrust.org.uk
Twitter: @mstrust
The MS Trust was set up in 1993 by Chris Jones and Jill Holt with shared convictions that research was underfunded, information was inadequate, especially for the newly diagnosed, the image of MS was unduly negative and National Health Service (NHS) services were inadequate.
They had personal experience of MS, and the MS Trust now provides trusted information, funds valuable research and takes on MS specialist nurse education.
National MS Society (US)
Website: www.nationalmssociety.org
Twitter: @mssociety
The National MS society was founded in the US by Sylvia Lawry, who also founded the MS International Federation to work abroad. When her brother was diagnosed with MS in 1945, she put a small advertisement in the New York Times: “Multiple Sclerosis. Will anyone recovered from it please communicate with patient."
She received more than 50 replies from people as desperate as she was to hear some positive news about MS. This resulted in her gathering together 20 of the most prominent research scientists and founding what later became the National MS Society.
MS Society (UK)
Website: www.mssociety.org.uk
Twitter: @mssocietyuk
On their website the MS society (UK) states, “We fund research, give grants, campaign for change, provide information and support, invest in MS specialists and lend a listening ear to those who need it."
They also describe seven goals that are at the heart of their strategy:
- Effective treatments: People with MS will have access to effective treatments for their condition, including treatments that can slow, stop or reverse the accumulation of disability.
- Responsive care and support: People with MS, including those being diagnosed, will have access to support that is responsive to their needs, and recognizes them as equal partners in their care.
- Preventing MS: Progress in research means that fewer people will develop MS.
- Quality information: People affected by MS will have access to high quality information that meets their needs.
- A strong community, independent lives: People affected by MS will be able to live their lives, strengthened by a community that ensures no one has to face MS alone.
- Supporting families and carers: The families and carers of people with MS will have access to the support they need.
- Greater certainty about the future: People with MS will have greater certainty about how their condition will progress.
As well as funding research and providing support and reliable information, the above charities also play a huge part in raising awareness and lobbying for change. The rights of MSers are always at the heart of what they do and there isn’t enough room in this post to begin to give them the credit they deserve.
Many of you will have come across all sorts of nonsense on the internet, and I would suggest you only go to the websites above if you have questions about MS. Their information will be well-researched and accurate and you will save yourself a lot of time!
Local Charities
There are also smaller, local charities that you should investigate in your area. I’m lucky to have the Sussex MS Treatment Centre a couple of miles down the road from me and they are fantastic.
They provide numerous treatments such as yoga for MS, keep fit and massage as well as an oxygen chamber providing subsidized HBOT treatment. I know they charge people a fraction of what it actually costs to provide this particular treatment, so they rely heavily on local fundraisers.
Unlike the huge charities mentioned above, these little guys don’t have dedicated fundraising departments so any support the local community can give is essential.
Do some research in your area and try and support what’s going on. Many centers have social events and provide opportunities to volunteer and get involved so you may end up opening a whole new MS world!