NEWS
March 2007 - Do you suffer from Dry mouth?
Dr Tappuni, Associate Specialist in Oral Medicine at Guy’s Hospital is looking for patients diagnosed with Sjögren’s Syndrome to take part in an investigation looking into the effectiveness of two mouth sprays in the relief of dry mouth.
You need to be aged between 30-75 years, and have been bothered by a sensation of dry mouth for at least 1 year, also you should be able to attend the study site at Guys hospital several times over 4 – 6 months. Travelling expenses will be paid, and you will receive £100 at the end of the study.
If you are interested in the study it will be explained to you in full detail. An information sheet will be given to you to keep and you will also be asked to sign a consent form. All participant information will be kept anonymous and held confidentially in line with the data protection act. If you would like to find out more without obligation, please contact Dr Tappuni on THANK YOU But no further applicants required.
December 2006 - Christmas Cards
A big thank you goes to everyone who purchased Christmas cards this year, we have completely sold out, and an especially big thank you goes to those who made such wonderful donations.
October 2006 - The Launch of National Giving Week and the DVD
A private screening of the National Giving Week DVD took take place in London at the Barbican on the 16th October 2006, and guests ranged from British industry through to all members of the press to publicise the campaign.
Linda Stone (Chairman), Bridget Crampton (Helpline) and Isabel York (Office Manager) all attended on behalf of the BSSA, and it created an opportunity for them to network and explain the work and aims of the BSSA.
Linda to the opportunity to speak to Ed Miliband, Minister for the Third Sector, who marked the start of National Giving Week by announcing, plans to establish a new centre of excellence to lead research into philanthropy and charitable giving.
National Giving Week Tea and Coffee Mornings
Ruth, with a lot of help from friends and family, held a coffee morning on the 19th October. They had a packed, cake and produce stall, a raffle and guess the weight of the cake, plus received close to £200 in donations during the event. They also had a lot of interest from the BSSA literature which hopefully will further raise awareness in Sjögren's Syndrome. Ruth sent the BSSA a cheque for an amazing £419 from the event. A huge well done goes to Ruth, and to all those who supported her.
Pat with the help of a few friends held a coffee morning for National Giving Week, they had a home bake and a raffle stall. The weather was perfect and everyone seemed to enjoy themselves and one person has become a member of the BSSA. The event raised a fantastic £124 and a new member to the BSSA. A big thank you goes to Pat and friends but also to Jean and Jack who kindly allowed the coffee morning to take place in their home.
On 18th October Joan, a committee member from Manchester / Northwest, held an “afternoon tea” to celebrate National Giving Week and the BSSA inclusion in the Charity DVD.
For national giving week the Bristol / Bath group held a bring and buy sale, which went extremely well, raising £63.30, thank you to all who attended. The Group also enjoyed a lovely lunch, the event was a very friendly and relaxed occasion.
The trustees joined in with National Giving Week by holding a coffee morning, where the BSSA Christmas cards where for sale, along with other BSSA merchandise.
(pictured left Louise Cotter, Isabel York, Simon Bowman, Elizabeth Price, Linda J Stone)
A big thank you to everyone who arranged a coffee morning or an afternoon tea for national Giving Week, and also a thank you to those who attended.
Many of you may not have been aware of the coffee mornings as it was something very last minute to co inside with National Giving Week, but the regional groups pulled out all the stops to make it a success and as you will have read, apart from the fantastic increase in awareness, there was also large sums of money raised.
Early next year the BSSA will be organising a coffee morning week, where we hope all members will join in, asking friends and family to join in, with the aim to continue the good work already started of increasing awareness and raising funds.
JULY 2006
The BSSA have been lucky enough to be selected to be part of the National Giving Week DVD. This is a unique DVD which has been piloted for National Giving Week by PR and media group St James’ House, in association with CAF.
Other charities feature along side the BSSA in the film and it is hoped that it will raise the profile of our charity, showcase some of the valuable work we do and increase donations received by the charity.
The DVD will be launched at the start of National Giving week, on Monday 16th October and copies of the DVD will be available through the CAF press office on Tel: 01732 520 120. For more information please click on National Giving Week logo above.
JULY 2006
Linda Drury will be attempting the Plymouth-Banjul challenge on 9th December and the BSSA is one of her chosen charities.
To find out more about her challenge: “Banjul or Bust" and / or if you would like to sponsor her - please access here .....
MARCH 2006
National Giving Week DVD
National Giving Week is the focus of a campaign in the UK aimed at raising public awareness of giving. Under the banner ‘making a difference’, the Charities Aid Foundation (CAF) will be working with donors and companies to identify the best ways to give effectively, with maximum positive impact and to more regular tax efficient giving to charity as part of everyday life.
Part of this campaign involves the release of a National Giving Week DVD. Specially commissioned and designed to communicate directly with the general public, British Industry and the voluntary sector, 200,000 DVDs will be produced in conjunction with a supporting website. The 12 month publicity campaign will be launched in October 2006, with some pre-launch press release activity in the period running up to this. The aim is to reach 8 million people with up-to-the-minute advice and information from the Government, tax experts, specialist advisors, celebrity interviews and case studies.
The DVD will feature over two hours of content and will promote a range of issues on all types of giving. In addition, a handful of organisations will feature in a series of three minute film slots, supporting the message of the campaign and adding value to the overall proposal.
The BSSA is delighted to be of over 12 charities selected to participate in this major national campaign and we are already busy working with a production company on our three minute film. An update on our progress with this exciting project will follow soon, so watch this space….
JANUARY 2006
New Year Sale – Thinking Ahead to Christmas 2006
It may seem premature to be thinking about Christmas 2006, but we all know how time can fly…To help ensure you’re on your way to being organised this year, why not buy your Christmas cards ahead of time? Not only will you save yourself a shopping trip later in the year, but you’ll be able to take advantage of some huge savings whilst supporting the association.
Stocks of each year’s design vary, but wherever possible we will endeavour to supply assorted packs (if required). Packs of 30 cards will be available for a limited time only at the bargain price of £5.00. If you’re interested in taking advantage of this fabulous offer, then please contact the office for further details.
DECEMBER 2005
Welcome To Our New Patron
In 2005, we approached Eleanor Bron to become patron of the BSSA and at the end of year we were delighted to receive her acceptance. Eleanor began her acting career in the 1960’s appearing with John Bird and John Fortune at Peter Cook’s satirical nightclub The Establishment. She made her screen debut alongside The Beatles in ‘Help’ in 1969 and since then has found continued success in film, TV, radio and on the stage. As well as writing for television she has written two autobiographical books and a novel.
Eleanor writes, “I first heard about the BSSA from one of my brothers, who is an ophthalmologist. If in any way, I can help further this terrific work, I shall feel very proud.”
On behalf of the association, our Chairman, Trustees and Medical Council would like to welcome Eleanor to the BSSA.
DECEMBER 2005
Ongoing Support from a Friend of the Association
In 1997, we were delighted to welcome Claire Rayner OBE, as our patron. Unfortunately, in recent years, Claire has had a series of health problems, resulting in her enduring an extensive stay in intensive care. As a result of this ill health, Clare unfortunately, no longer feels able to play an active role as patron for the BSSA.
However, we are delighted to report that Claire remains an avid supporter of the BSSA and is happy to be listed as such in all of our literature and promotional material. In addition, she has kindly agreed to join our newly established Advisory Board which was set up in late 2004 to recognise individuals who have made a significant contribution to the Association. On behalf of the association, our Chairman, Trustees and Medical Council would like to thank Claire for her continued support and wish her well for the future.
SEPTEMBER/OCTOBER 2005
Golden Goodbye…
September 2005 saw the end of Darren Hardy’s six month secondment at the BSSA. In addition to carrying out research into the possibility of organising a Sjögren’s Syndrome awareness day, Darren helped to produce a draft fundraising pack which is currently being reviewed and updated and will eventually form part of the Regional Group Guidelines.
The third project Darren undertook was the organisation of a promotional campaign, targeting clinicians in the oral medicine and ophthalmic fields. As a direct result of his hard work, we have designed a BSSA note pad (which will form part of an information pack) and we are in the process of finalising our mailing list of relevant medical specialists. It is anticipated that this campaign will be launched in the next couple of months and we are confident that it will help to increase awareness and ultimately hope to improve the diagnosis rate and referral of patients.
Upon leaving the association, Darren said “I thank Roger Jefcoate, the John Lewis Golden Jubilee Trust and the BSSA for giving me this opportunity. “I intend to keep in touch with the BSSA and help as much as I possibly can.”
While on his secondment, Darren made sure that the work of the association was bought to the attention of the John Lewis (Solihull) Charity Committee.
In October 2005 we were delighted to receive a generous donation of £1,000 to help fund the promotional campaign that Darren initiated. We would like to thank Darren and John Lewis Solihull for their support over the past six months. It has been a pleasure to work together and we would welcome the opportunity to do so again in the future.
OCTOBER 2005
Racing Ahead In The Fundraising Stakes...
Following the success of the Kellogg's Cornflakes Great Walk, we have been delighted to see the fundraising fun continue with over £1,900 being raised at sponsored running events across the UK.
BSSA member, Claire Goodchild, raised over £130 at the Birmingham Hydro-Active 5km Women's Challenge; Denise Gaffney raised over £440 at the Britannic Asset Management 10km race in Glasgow, and; Gemma and Adam Pegg (son and daughter of BSSA member, Debbie Evans - pictured above) raised a phenomenal £1,300 at the Robin Hood Half Marathon in Nottingham.
APRIL - SEPTEMBER 2005
Fundraising Footsteps...
Between April and September Kellogg's organised a series of sponsored walks throughout the UK as part of the 'Kellogg's Corn Flakes Great Walk 2005'. At the beginning of April, Karen Churches set off on a marathon walk from John O'Groats to Land's End. As part of this marathon, children and adults of all ages and abilities were invited to join Karen on one of the many 10k sponsored walks that took place along her route in Scotland, England, Northern Ireland, Republic of Ireland and Wales.
Rather than opting to raise money for just one beneficiary, Kellogg's invited people to take part in the event on behalf of any charity they wish and so we asked members to get involved and help raise vital funds for the BSSA Research and Education Fund.
Office Manager, Kate Endacott took part in the West Midlands 10k walk in Dudley with her friend, raising over £140 in sponsorship. A further five BSSA members enthusiastically rallied support from friends and family and took part in events in their local area raising over £450.
APRIL 2005
Standing Out From The Crowd...
We were once again delighted to receive an invitation and complimentary stand at the British Society of Rheumatology's Annual Meeting. This year's meeting was held just down the road from the BSSA office, at the International Convention Centre in Birmingham.
With the help of a handful of volunteers, Angela Mullally (BSSA Member, pictured left), Darren Hardy (John Lewis Secondee, pictured centre) and Mandy Canavan (BSSA Helpline Nurse), Kate Endacott (pictured right) worked hard to raise awareness of the Sjögren's Syndrome and promote the work of the association. Over the course of the four day event, Linda Stone (Chairman) and Simon Bowman (Medical President) were also in attendance along with Medical Council members Elizabeth Price, Colin Pease, John Hunter, Nurhan Sutcliffe and Shirley Rigby, who all attended the event as delegates.
In addition to handing out information posters and leaflets and distributing BSSA sweets and merchandise, BSSA representatives took full advantage of the chance to talk to Rheumatologists and nursing staff from the around the country about their experience of the condition and the needs of their patients.
In 2004, Simon Bowman organised a Specialist Interest Group on Sjögren's Syndrome, which attracted around 75 delegates. This year, however, we were delighted to see 'Systemic Sjögren's Syndrome' featured as an item on the main scientific programme. The session was chaired by Simon and attended by approximately 350 delegates. Guest speakers included Professor Pitzalis, who was recently awarded the 2004 BSSA Research Grant and Philip Fox, who is the President of the Sjögren's Syndrome Foundation in America.
In addition to speaking to delegates at the meeting, BSSA representatives took full advantages of the opportunity to develop links with some of the other exhibitors including the Raynaud's and Scleroderma Association, National Rheumatoid Arthritis Society and Lupus UK.
MARCH 2005
A Golden Opportunity.....
On March 11th, we were delighted to have a new face join the BSSA team. Darren Hardy (pictured right) is employed on a Management Development Programme at John lewis in Solihull, Birmingham, but thanks to a scheme run by his employer, he is currently on secondment with the BSSA.
The Golden Jubilee Trust
The Golden Jubilee Trust is a registered charity, established by the John Lewis Partnership in April 2000 to celebrate the Partnership's Golden Jubilee. An endowment of £5m was invested into the scheme, and the income from this investment is used by the board of trustees to make approximately 20 awards a year. Each award is fundamentally used to cover the 'pay costs' for each staff member (Partner) on secondment, during their absence from their role within John Lewis.
Applications are invited from staff at all levels, and once the initial request is approved by a local/divisional charitites secretary, it is then reviewed by the board of trustees before a final decision is made. The success of an application depends on a number of factors, including what the charity wants a Partner to do, whether the Partner has the right skills or experience for the secondment and whether there will be a real benefit to the community for the work being done.
BSSA Secondment
In the case of our secondment, it was agreed that Darren will work alongside Office Manager, Kate Endacott, one day a week for a total of six months. BSSA trustees proposed that darren's core objectives would be to:
Organise a promotional campaign, targeting clinicians, and GPs to increase awareness of Sjögren's Syndrome and the BSSA
Produce a fundraising pack for use within the regional group network; and
Investigate the possibility of organising a Sjögren's Syndrome Awareness Day.
Darren's first day went well, and saw him make good progress with the planning stage of each objective. Darren commented, "it was a busy first day, but I am looking forward to helping the charity to fulfil some of its objectives. It really feels that John Lewis and I are making a difference".
Darren is the first member of staff from the Solihull branch to take part in the Golden Jubilee Scheme, but his involvement has sparked a great deal of interest from other partners and so it looks as though we may be the first of many charities within the region to receive help, which is fantastic news.
JANUARY/FEBRUARY 2005
Exceeding Our Expectations....
2004 was a busy year for staff at the NEC Group in Birmingham and we are extremely grateful for their continued support and fundraising efforts.
Since being nominated as their 'staff charity of the year' in January 2004, they have worked tirelessly to raise funds for the association and we are delighted to announce that the total amount raised is £10,643!!
In addition to the regular fundraising initiatives such as dress down days and raffles, we were delighted to receive two significant amounts of money from the NEC Fishing Club and Car Parks Department.
On February 22nd, BSSA Chairman, Linda Stone (pictured right) and Office Manager, Kate Endacott met with the NEC Staff Charity Co-ordinator, Nadine Donald (pictured left) and BSSA member, Angela Mullally (pictured centre) to accept a cheque on behalf of the association.
Angela commented, "this is the best fundraising year the NEC staff have ever had. We have never raised so much money before and are proud to have been able to support the BSSA".
As requested, we are going to do our best to ensure that a large percentage of this money is put towards research projects and resources within the West Midlands, but in addition, some of the money will be used to develop services such as the BSSA helpline.
JULY 2004
Fundraising Frenzy!!!
At the end of last year enthusiastic member, Angela Mullally nominated the BSSA as her choice for a staff charity fundraising scheme run by her employer. The scheme is run on an annual basis and gives staff members the opportunity to nominate and vote for an organisation for which they wish to raise funds for. Despite competition from seven other organisations, we were delighted to be chosen as the NEC Group staff charity for 2004.
Since January 2004, staff at the NEC Group in Birmingham have been busy raising funds on our behalf by selling BSSA merchandise, collecting donations, organising raffles and holding ‘dress down' days.
On July 18th we were delighted to be able to attend the NEC Group's annual Summer Gala at the Heart Of England Event Centre near Coventry . Along with nine willing volunteers, Office Manager, Kate Endacott (pictured right) and Chairman, Linda Stone seized the opportunity to meet members of the NEC Group staff and raise further funds for the association.
We were lucky to escape the recent spell of rain and had an enjoyable day in the sunshine, promoting the BSSA and raising over £650. We held a raffle, collected donations, handed out BSSA sweets and balloons, sold items from our new range of merchandise and educated people about the condition by distributing BSSA information leaflets.
During the day, guests were encouraged to get involved in a number of outdoor activities including quad biking, football and abseiling and for those who had always fancied themselves as a bit of a James Bond, there was also a 007 adventure to take part in!
The total amount of money raised from the fundraising activities of the NEC Group staff since January, now stands at £8000!
MAY/JUNE 2004
Having a "rewarding" time.....
In May, BSSA Chairman, Linda Stone, was awarded the Royal Pharmaceutical Society's Charter Gold Medal for outstanding service to her profession both nationally and internationally. The Society is the statutory regulator and professional leadership organization for 47,000 pharmacists and only presents one Charter Gold Medal each year.
And then in June, in the Birthday Honours list, the Queen appointed Linda an Officer of the Order of the British Empire, for services to the National Health Service.
Linda said “It has been an amazing few weeks. I have spent all my working life trying to develop and improve standards of practice within pharmacy so that we can better help the patients and public for whom we care. To be recognized by my peers with the award of the Charter Gold Medal is more than I could ever have dreamed of. To be honoured by the Queen as well, with the award of the OBE, is overwhelming. I feel very humble, and I am delighted that the vital role that pharmacists play in health care is being publicly recognised”
APRIL 2004
Making an Exhibition of Ourselves.....
Following the success of last year, we were delighted to receive an invitation from the British Society of Rheumatology to once again attend their Annual Meeting. This year’s event was held at the Edinburgh International Conference Centre and it provided an excellent opportunity for the BSSA to raise awareness of Sjögren's Syndrome within the Rheumatology field.
Kate Endacott (Office Manager, pictured left) manned the stand during the four day event with the help of Marjorie Howie (Glasgow RLO - pictured right) and Louise Pendreich (Edinburgh RLO) and they proudly displayed all the new BSSA merchandise and literature and took full advantage of the opportunity to liaise with other exhibitors, pharmaceutical companies and delegates.
Simon Bowman (Medical President) and Linda Stone (BSSA Chairman) were also in attendance to help promote the BSSA and raise awareness of the condition. Whilst at the meeting, Simon organised a successful Sjögren's Specialist Interest Group—with guest speakers, Prof Venables, Dr Price, Dr Sutcliffe and Dr Griffiths—that was attended by about 75 delegates. Linda attended a panel debate run by the ARMA (Arthritis and Musculoskeletal Alliance) that was aimed at raising awareness of conditions like Sjögren's Syndrome with the Secretary of State for Health (John Reid).
