Muscular Dystrophy Campaign – #FastForward

I have done another interview with the local newspaper, this time about the Muscular Dystrophy Campaign’s new Fast Forward campaign, you can read it here – New campaign offers lifeline for Gloucestershire children in need of muscle wasting treatment

 

A drop of water making multicoloured circular ripples

DROP

DROP Logo

As some of you may know I have been working with a newly formed locally charity for just over a year, the charity is now officially registered with the charity commission and I am a trustee, a lot of work has gone into becoming a CIO,  making contacts within Gloucestershire and employing a development worker, we

Guest posts for Not Even a Bag of Sugar

I haven’t been totally slacking off though, my great friend Kylie, from Not Even a Bag od Sugar, convinced me to write a couple of open and honest articles about myself and Duchenne for her blog.  I really am glad I did, I have had such amazing feedback and feel the articles may actually help[…]

Wheelchair – Goal Achieved!

As usual I have been slacking with posts, the main news though is I have my wheelchair at last, not thanks to wheelchair services but to charities and lots of very kind people donating. Here are a couple of news articles about it – Echo News Article : Success for man who is able to leave[…]

Cheltenham Fundraising Event

As you probably know I am trying to raise money for a new wheelchair, the NHS are still being stubborn so my neighbours have offered to set up a fundraising event, it has got much larger than I expected and they are doing an excellent job.  I decided I’d tweet some of my followers from[…]

Gloucestershire Echo Article & Fundraising

As you all know I am trying to raise money for a new wheelchair, the NHS are still being stubborn so my neighbours have offered to set up a fundraising event, it has got much larger than I expected and they are doing an excellent job.  I decided I’d tweet some of my followers from[…]

Wheelchair Services – Request for me to sign agreement on communication

I received this letter in June regarding my email correspondence with Wheelchair Services and Social Services, lets be clear I did not excessively email or phone them, probably 3 or 4 phone calls and 33 emails (a lot of which were confirming I had received an email) in about 105 days. As I was unhappy[…]

Another Wheelchair Assessment

After a lot of wrangling my advocate from the Muscular Dystrophy Campaign managed to get Gloucestershire Wheelchair Services to consider giving me a wheelchair voucher, this was turned down originally as my “needs may change within five years”, this was based purely the Occupational Therapist’s and Rehab Engineer’s opinions, they have no medical training and[…]