MP hosts 30th Anniversary Reception in Parliament for the Alsager based Raynaud’s and Scleroderma Association
Fiona Bruce MP, this week, hosted the 30th Anniversary Reception in Parliament for the Alsager based Raynaud’s and Scleroderma Association (RSA) in Parliament.
Under the inspirational direction of Chief Executive, Alsager resident, Anne Mawdsley, the charity based at 112 Crewe Road, Alsager has raised £12 million pounds since its creation.
Speaking at the event, Fiona Bruce MP said:
‘I am delighted to be hosting this Reception in Parliament for a charity which I am extremely proud to have within my Congleton Constituency. The RSA has increased awareness of Raynaud’s and Scleroderma, developed better communication between doctors and patients, made advancements in research, treatment and care and seen mortality rates decrease’.
Fiona read out the following message of congratulations to Anne Mawdesley and the RSA from the Prime Minister and Deputy Prime Minister:
‘Please accept our congratulations to you and all of your team at the Raynaud’s and Scleroderma Association as you mark its 30th Anniversary.
We are pleased to offer you our continued support. Your role is vital in supporting people with these often little known and poorly understood conditions, in improving their health, their quality of life and outcomes.
We wish you every success for the future’.
The event was attended by MPs, Peers and supporters of the RSA to mark the landmark occasion.
The RSA’S current fundraising campaign is its Cool Million campaign, which was launched by Fiona in August 2010 and has already raised £500,000 which will be used for further research into Scleroderma.
The President of the RSA, Professor Dame Carol Black, highlighted the progress which has been achieved over the past 30 years through the charity’s work:
‘From 1990 to the mid 2000s, survival for five years from the worst form of the disease improved from 69% - 84%. Through early meticulous screening we now recognise internal organ complications much sooner’.
Professor Black also went on to highlight some of the personal sponsored challenges which Anne Mawdesley has undertaken in order to help raise money for the RSA:
‘Anne has always challenged herself, and to date has raised £120,000 by personal sponsored challenges. Here are some of the things she has done:
- In 2000, swam a mile with Olympic swimmers Sharron Davies and David Wilkie
- In 2004, swam with sharks (not in a cage!) with David Wilkie
- In 2010, with Jo Kaddish, chair of Trustees, took a team of huskies across Finland in minus 30 degrees – a severe challenge given her Raynauds’.
In a moving and deeply thought provoking speech, Anne Mawdesley said:
‘I am in daily contact with people who have Raynaud’s and Scleroderma and have lost many friends to Scleroderma. Several new treatments are now available especially for the most life threatening aspects of the condition, such as pulmonary hypertension, which can dramatically change a person’s life. I believe that everyone deserves to have the best quality of life possible and therefore more research is needed to investigate causes and treatments.
My message to all present today is to stress the importance of early diagnosis and that timely access to the best evidence-based treatments should be available to all patients, irrespective of postcode or cost.
I would like to thank everyone who has been part of my journey. Without the support of our trustees, patrons, staff, family, friends, and everyone involved with the RSA, we would not be celebrating here today. This includes physicians and researchers who are vital to our future progress. My vision is that the Association will continue to grow and develop so that people with Raynaud’s and scleroderma will always have access to help, advice, the best treatments available and above all, hope for the future’.
Speaking from Parliament after the event, Fiona said:
‘This Reception showed how important the work of the RSA is and the stories told by both Carol and Anne touched all of those present, the reception was very well attended by RSA supporters who had travelled from all over the country. The highlight of the Reception was, however, passing on a message from the Prime Minister and the Deputy Prime Minister.’
Fiona continued:
‘I have no doubt that the message from 10 Downing Street will spur Anne and all the RSA’s supporters to continue their very important work and I look forward to supporting them on an ongoing basis’.
The mission of the Raynaud's & Scleroderma Association is to provide educational and emotional support for people with Raynaud's and scleroderma and their families. The Association is committed to increasing awareness of these potentially devastating conditions and raising money for essential research in order to determine cause, enhance treatment and ultimately find a cure.
The Association's aims are to:
- create a greater awareness of Raynaud's and scleroderma
- offer support, advice, and information to sufferers and their families
- put patients in touch with each other in order to exchange ideas and information
- assist in the welfare of the chronically sick, and those with disabilities resulting from Raynaud's and scleroderma
- raise funds to further research into these conditions and to disseminate the results of such research
- produce publications about Raynaud's and scleroderma
The Association has four main areas of funding:
- Welfare projects - to help individuals by offering advice, support and information and where appropriate, provide items of equipment which are not available on the NHS.
- Research projects - research is expensive and we are working hard to continue funding vital projects at specialist centres nationwide. There are many exciting projects and we hope that one day a cure and better treatments will result.
- Childhood Scleroderma - to support families of children with scleroderma and to fund research in this specific area.
- Running costs - in order to be able to support the day to day work of the Association, we need to fund our running costs which are kept to an absolute minimum.
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Back row: (l to r) Fiona Bruce MP, Jim Dobbin MP, Anne Mawdsley (Chief Executive, RSA), Professor Dame Carol Black (President, RSA), David Amess MP Front row: Baroness Masham of Ilton |
To donate to the Cool Millions campaign visit: www.justgiving.com/rsamillion
