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MD needs to be recognised in East Anglia
I am 24 live in Norfolk and have LG2B, the only people who actually understand my condition is my dad and my consultant. I find it sad that no one really raises money for MD where i am and even when Tesco’s raised money for MD, they still didnt know what it was. I would love to have a little stand with info and raise some money at my local supermarket, can anyone help with me this????
Re: MD needs to be recognised in East AngliaHi,
I know the feeling you are describing and it can be isolating and extremely frustrating. There are a number of muscle groups across the country and I see there is one for the East of England if you fancy getting involved?
If you have any ideas about fundraising or raising awareness there is a section that gives guidance on planning such activities:
http://www.muscular-dystrophy.org/get_involved/fundraising_events/plan_your_own_event
There is a long way to go with raising awareness of MD but things are moving. Regional campaigning is certainly gaining momentum but is a long process. Feel free if you want to bounce some ideas about, there will be help and info available from the events department if you decide you want to organise something in your area.
Good luck and keep us posted.
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: MD needs to be recognised in East AngliaDear Sarah and Rumami,
Thank you so much for posting on TalkMD and discussing how people in East Anglia can get involved with the Muscular Dystrophy Campaign. I’m the Volunteer Fundraising Manager for the Muscular Dystrophy Campaign for the East Anglia area and it’s really interesting to hear about how little people know about muscle disease in the area.
Sarah’s absoloutly right about the muscle groups, they are a fantastic way of meeting up with people in the area affected by muscle disease and talk about any issues that are affecting you (e.g access to treatment, diagnosis issues, access to hydrotherapy e.t.c) . The muscle groups meet about every 4 months and discuss these issues with members of our campaigns team and special guests, for example it could be your local MP, a locl clinician, physiotherapist or councillor. If you woul like me to notify you when the East of England Muscle group will next be meeting please let me know.
With regards to raising the awareness of muscle disease in East Anglia and fundraising, we do have a ‘Norfolk and Norwich Branch of the Muscular Dystrophy Campaign’ These are a group of individuals who meet up monthly to plan, and then carry out fundraising and awareness raising on behalf of the charity. They carry out street collections, organise events and are planning a christmas concert at the moment. They are always looking for new people to join this friendly group of fundraisers.
I also support individuals who want to fundraise or volunteer for the Muscular Dystrophy Camapign. If your really passionate about increasing the awareness of muscle disease in your local area then you may be interested in some of our volunteering roles such as ‘volunteer speaker’. This role is all about getting in to the community to spread the word about muscle disease and the Muscular Dystrophy Campaign. Take a look at our volunteering roles at:
http://www.muscular-dystrophy.org/get_involved/be_a_volunteer/volunteering_opportunities
Finally we have recently set up a peer support service called MD links where we link up people with similar conditions. If your feelingparticularly isolated it offers a great way to talk to people who have gone through similar experiances. You can find out more about it here:
http://www.muscular-dystrophy.org/how_we_help_you/peer_support/md_linksI hope that’s given you a bit of an insight in to what’s going on in East Anglia, we know there is a lot more that needs to be done and we’re always very greatful for volunteers and fundraisers who can help us spread the word about muscle disease and the Muscular Dystrophy Campaign.
Please do contact me if you want to have a chat about anything mentioned here in more detail.Kind Regards
Laural.watts@muscular-dystrophy.org
02078034821
07771374843Re: MD needs to be recognised in East AngliaHi Rumami,
I am an East Anglian dipping my toes in the North Sea [not literally but figuratively], while I find excellent emotional support through my family and best friend as well as on here and online, what I do find distinctly lacking in my local area is professional understanding of MD altogether, let alone my specifics [FSH].
I imagine you, like me, get the blank faced expression when you say “I have MD”, or bless some one tries by asking “Is that like MS?” [to quote Jethro Gibbs from NCIS “Kinda if you’re dyslexic”].
Sadly this is not new, many years ago [during the 1980’s] I was Secretary of a local branch but man power dwindled and people got rather charity-fatigued and being such a rural area transport is a constant battle, we sadly had to fold-up.
Things are improving and MDC are battling at the fore front for us
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
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