Posts Tagged ‘muscular dystrophy’

UPDATE – Petition re respite places for disabled adults with life shortening conditions

1 November 2013

Received from Robert WatsonSIGN HIS PETITION HERE  and then share with your own contacts asking them to do the same.

Original details here

I would like to update on what has been happening with the adult respite campaign which I set up. My 38 Degrees petition still needs your support. Some significant progress has been made in terms of taking the petition to the Scottish Parliament, which will be the biggest milestone of the campaign so far. 

RobertWOne significant factor in helping get the petition to Parliament has been the involvement of the well known Scottish Labour MSP Jackie Baillie. Ms Baillie is already involved with the Muscular Dystrophy Campaign as she helps organise the Cross Party Group meetings on MD that are held at the Scottish Parliament every so often, and she already told me when I met her at an Action Duchenne lobby of parliament back in June that she was very willing to help support myself and all the other young adults with this campaign.  It was great that she showed her commitment to helping us by coming to one of the CHAS Young Adult Council meetings to chat with myself and other affected young adults about how we can take the campaign forward.



Muscular Dystrophy Campaign – National conference

13 October 2011

Received from  Muscular Dystrophy Campaign

**We are live streaming our 2011 National Conference online**

We hope to be able to meet as many of you as possible in person at our National Conference on Saturday but, for those of you who can’t make the trip to Nottingham we will be live streaming the event for free via our channel on uScreen:  click here

All you have to do on the day of the conference is visit our uScreen channel from 10am and the main speakers will be streamed live from the stage to the comfort of your living room, or wherever else you have your computer.

There are other digital ways you can get involved on the day too, like swinging by Facebook or following our tweets on the day. Please feel free to join in too; we will be tagging tweets #mdcnc



Warm regards,

David Pearce
Direct Marketing and Digital Manager

DBC launches report into Welfare Reform Bill

23 March 2011

Carer Watch members support this protest and some are making plans to attend

A report published today by the Disability Benefits Consortium a coalition of 41 charities and organisations shows how welfare reform changes may harm disabled people.

The report Benefiting disabled people? highlights concerns over the impact of reforms to vital benefits like Employment and Support Allowance (ESA) and Disability Living Allowance (DLA) on thousands of disabled people and their families.

The report, presents the findings of recent surveys. The Disability Benefits Consortium surveyed 6,000 disabled people and found that:

Petition the Minister for Disabled People to Recall the Public Consultation on DLA Reform

3 February 2011

Have you supported this petition by The Broken Of Britain. Only one more week remaining.

We, the undersigned, urge the Minister for Disabled People to recall the Public Consultation on Disability Living Allowance (DLA) reform, and to cease work on reform of this benefit, due to serious flaws in the consultation paper. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people.

Full details here

CampaignsMD launch new blog – 14-Oct-2010

14 October 2010

This is a new blog  written by the members of Muscular Dystrophy Campaigns’ Policy and Campaigns team.

We’ll be using this blog as a diary for the work that we’re doing to  highlight the problems faced by individuals and families living with muscle disease – gaps in care; the ‘postcode lottery’; financial hardship; early deaths.

Together we can improve the quality of life and boost independence for people living with muscle disease.

Please get in touch and leave your comments!

Telephone: 020 7803 4847
Twitter: CampaignsMD

Muscular Dystrophy Campaign – TalkMD

8 September 2010

Muscular Dystrophy Campaign   have launched a new support forum.

Details to register can be found here

Muscular Dystrophy Campaign

28 May 2010

Muscular dystrophy and related muscle diseases cause muscles to waste and weaken. More than 70,000 babies, children and adults in the UK are affected.

Read here

2010 national patient survey on living with muscle disease


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