Tuesday, June 07, 2011

NSGCCE follower raises funds for National Eczema Society

One of our twitter followers has walked 630 miles to raise money for the National Eczema Society. On Good Friday, 22nd April 2011, a team of intrepid walkers led by Stephen and Roddy Jenkins, set out from the West Somerset resort of Minehead, on a walk skirting the South West coast. The team is undertaking the walk in an effort to raise a massive £10,000 for the National Eczema Society and help them to facilitate and support research into this skin condition.

Over the last goodness knows how many months, Roddy (@RoddyJenkins) has been tweeting a lot with our own Amanda Roberts (@eczemasupport) about this feat of endurance. Roddy Jenkins has suffered all his life from chronic eczema (“boiling of the skin”) which, for him, has meant skin breakdown, immune system complications, a variety of allergies and much suffering along the way. Roddy is also partially sighted.

Stephen (Roddy’s father) and Roddy completed this eppic march on 31 May 2001 after 40 days and averaging about 16 miles a day. If you would like to help Stephen and Roddy by donating, you can do this from Roddy's fundraising page at http://www.justgiving.com/Roddy-Jenkins. They are over half way to the £10,000 target. Every pound raised will help to fund much needed research. We wish them both all the very best in this huge challenge. To review their progress reports and itinerary just go to the National Eczema Society's website.

Minehead 630 miles

Eczema Treatments Priority Setting Partnership

If you, or someone close to you, are one of the almost 6 million eczema sufferers in the UK you know first hand the challenges associated with living with this unpredictable, painful and incurable condition.

Exacerbated by a lack of research into available and effective treatments, one of the most frustrating aspects of eczema remains the process of trial and error required to design and implement an effective treatment regime to both strengthen the skin barrier and manage the inflammation, redness and incessant itch.

As part of its commitment to improving patient care in the UK, the National Eczema Society is therefore calling on sufferers across the country to draw on their own experience of eczema this summer to help shape future treatment research. The Eczema Treatment Prioritisation Exercise is being run by the highly regarded University of Nottingham and the James Lind Alliance. By means of a two part survey, the objective is to identify questions that patients, carers and health professionals think are important about eczema treatments which have not yet been researched and then to establish which of those questions need to be answered as a priority.

Respondents are initially asked to submit up to five questions that they would like answering on the treatment of eczema. These results will then be collated and respondents invited to rank the most frequently asked questions in order of importance to them. The top ten questions, as identified and ranked by respondents, will subsequently be developed into research proposals.

Chief Executive of the National Eczema Society, Margaret Cox, feels this is a crucial step forward in addressing the issue of eczema in the UK. “With the such a huge number of eczema sufferers in the UK, the need for greater understanding of existing treatments and how best to employ them is vital to the successful management of what can be a lifelong condition. There remains a significant lack of evidence in this field and we aim to help address the issue this summer with the support of both patients and their carers. By putting the patient at the heart of the research process and identifying which questions are of most importance to them we can help to ensure that precious research funding is directed towards providing the answers that would have the most impact on both sufferers and those who care for them.”

If you would like to be involved in shaping the future of eczema research you can either complete the short survey online at http://www.homeforeczema.org/ or, if you do not have internet access, you can request a paper version from the National Eczema Society's helpline on 0800 089 1122. The survey will be available to complete until the end of July with the results of the project due to be published in Spring 2012. This is a major oportunity to have your say and to influence the decision makers over which research projects they undertake. The results of this exercise will determine current uncertainties in the treatment of eczema and the information gained will be used to guide the design of future eczema research projects and research funding opportunities.

Please, if you can, complete the survey. It is so important and will affect which research projects are undertaken over the coming years. If you would like to take part in this exercise, please click the panel on the home page of the H.O.M.E website that asks "Do you have unanswered questions about the treatment of eczema?" Your time will count for a lot. Thank you.

Tuesday, July 15, 2008

The National Eczema Society launch their new website.

The National Eczema Society has now launched their new web site. It contains a wealth of good information for sufferers of eczema, from helplines to support groups to fact sheets and so much more. If you would like to join the National Eczema Society click here for full details

Thursday, January 10, 2008

New Helpline Number for the National Eczema Society

The National Eczema Society helpline has new contact details. To talk to someone at the Society call 0800-089-1122. The helpline is open from Monday to Friday 8am to 8pm or you can email them at helpline@eczema.org. The National Eczema Society web address is www.eczema.org.

Monday, August 06, 2007

Can You Help?

Up to 1 in 3 of our children and 1 in 12 adults have eczema. The society provides information and support, funds research into treatments and possible cures and works to dispel myths so those who have eczema need not feel stigmatised, guilty or isolated. As part of National Eczema Week, the society Chief Executive, Margaret Cox, will be attending board meetings, AGM’s and just going to work in her PJ’s! If you feel able to sponsor this brave lady please goto http://www.justgiving.com/PJs4eczema. To find out more about National Eczema Week, goto Original Link No Longer Available. To find out more about the National Eczema Society, including membership goto http://www.eczema.org. Thank you.

Monday, March 05, 2007

Take up the Challenge to support the National Eczema Society

Taking part in an overseas event to raise money is an exciting and challenging way of supporting the National Eczema Society. Challenges can include walking, running, cycling, horse (or even camel) riding in distant countries including China, Mexico, Cuba and India. You don't have to be super fit to take part but the challenges are physically challenging. Training and fitness is a must. But, this is not a race - the aim is for you to complete the challenge at your own pace. Whilst there will be people of differing levels of fitness on the trek you will find that there is a great sense of team spirit and support for everyone to complete the challenge. People from all walks of life and of all ages take part in challenge events. From 18 onwards, everyone is welcome as long as you are fit and healthy enough to do the challenge. For more details and an information pack visit the National Eczema Society at www.eczema.org.