I am sharing the email below that I received today from Sue Millman, Chief Executive of Ataxia UK in which she urges everyone to contact their MP, friends and family to sign the Ataxia UK open letter to allow urgent access to the first licence treatment for Friedreich’s Ataxia. This is a very important message […]
Sign our Open Letter to the Prime Minister Read More »
Independent Living Assistant – IMMEDIATE START REQUIRED I am a 48-year-old man living in the Stansty area of Wrexham. I am a wheelchair user and live with Friedreich’s Ataxia. Subsequently, I require 24/7 care and require administrative support to remain independent. I am an author and disabled activist with a good sense of humour. I
Independent Living Assistant Needed Read More »
The time to speak out has arrived. Throughout 2024 and in fact ever since 2015, I have been struggling to enjoy my limited life due to ongoing battles with Wrexham Country Borough Council. This blog will simply focus on the issues I am having with my shutter doors. I have written about this topic in
My Door is Always Open… Read More »
Welcome to my “mini-blog” (Abridged version) I am a full time wheelchair user and live with a progressive, genetic disease of the nervous system known as Friedreich’s Ataxia (FA). This debilitating disease only affects one in 50,000 people. The median age of death of a person with FA is 35, so at age 47 I
Mini Blog – Abridged Copy Read More »
Here is my proposal for a Commissioner for Disabled People. Advocacy Resources, tools and authority Clarification and investigation Publicity, pressure and lobbying Support and empathy Mediation and guidance Advice and access Precedents, progress and consistency a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live
Commissioner for Disabled People Read More »
I have written a series of mini blogs to a number of organisations of which I am a member. These blogs open lines of communication with various groups as I struggle to attend their meetings. I have therefore had to be creative and hopefully these mini blogs will be effective enough to get my message
Mini Blog to Comrades Read More »
I am happy to announce that my fundraising page is now open at JustGiving. I will be taking on the virtual challenge of cycling the length of the United Kingdom from John O’Groats to Land’s End to raise funds for a charity that is close to my heart – Ataxia UK. To visit my JustGiving
JustGiving Page Launched Read More »
I apologise for being rather distracted lately, but I have a lot on my plate. I should be enjoying what remains of my life and celebrating the fact that I have lived over and above the median age of death for someone with Friedreich’s Ataxia, which is 35 years of age. I am currently 47-years-old.
Appeal and Complaint Submitted Read More »
This is a article from the South Wales Argus about a video conference that I took part in last week, along with my good friend and comrade Chris Hall. It was a important consultation with the Senedd Health and Social Care Committee about the future of independent living and how it will be funded. The
Disabled people face battle for health and social care support Read More »
I am writing the following blog in a very careful manner. I just want to relay the facts and the injustice, as I see it, being served to me by the Adult Social Care department at Wrexham County Borough Council (WCBC). In 2022, I expressed an interest in taking a short break to Florida. This
