(S.A.S) - News

Sarcoidosis Awareness Society

A voluntary organisation dedicated to providing Support for Sarcoidosis sufferers

“our future is now“

News and History

6th December 2008 - The first trial support meet up took place at the Norwich Airport
                                Holiday Inn. This was attended by Sarcoidosis sufferers and
                                partners from Norfolk and Suffolk and was hosted by S.A.S
                                Treasurer Keith Bigland.

4th February 2009 - First Trustee meeting formally established our Society as a
voluntary organisation with statuary constitution and objects.

14th February 2009 - Keith Bigland and Martine Caitlan set up the campaign awareness
group on SILA Sarcoidosis Community Forum.

17th February 2009 - Keith Bigland was in the local Papers. Norwich Evening News and
                                Eastern Daily Press. The Survey's started in the UK and USA. This
                                is still being carried out and being filled in by Sarcoidosis
                                sufferers. The first petition to the Prime Minister was launched
                                and created by Keith Bigland under the temporary Society name of
                                "UK Sarcoidosis Information and Support Group".

7th March 2009 - The 2nd and successful support group happened in Norwich and it is
continuing to grow with the numbers of Sufferers turning up.

9th March 2009 - Established Contact with Member of Parliament in the Essex Area.
                          Martine Caitlan (Chair Person) was successful in the meeting with her
                          local MP and still continues to have meetings with him to get more
                          information within the NHS.

6th April 2009 - Charlotte Doggett (Secretary) begun her Awakeathon staying up for a
whole 100 hours to get an understanding of what Sarcoidosis Sufferers
have to cope with their fatigue levels.

10th April 2009 - Charlotte Doggett was in her local newspaper, Evening Echo for her
Awakeathon. Sharing her experience and understanding of what
Sarcoidosis is and how it affects you.

11th April 2009 - Charlotte Doggett finished her Awakeathon and shared her experience
on the SILA Community forum.

14th April 2009 - Charlotte Doggett and Martine Caitlan had an interview on Radio BBC
Essex promoting the Awakeathon and Sarcoidosis to everyone able to
hear and understand what it is.

27th May 2009 - Received PCT response to MP query Sarcoidosis Awareness. MP has now
a more open mind to Sarcoidosis and understands that it is a
debilitating disease.

4th June 2009 - The S.A.S handed in a Petition with over 700 signatures to number 10
Downing Street London. This was to raise awareness on the disease for
the medical profession due to their lack of Knowledge.

26th June 2009 - Essex area held their first support meet up and has become regular
                          meet up every quarter.
                          On the same day S.A.S was awarded a small grant to the S.A.S from
                          the South West Essex PCT.

2nd July 2009 - Postal Response from the Department of Health regarding the petition,
                       stating that the government do understand that Sarcoidosis is a
                       debilitating and distressing autoimmune condition and that the Medical
                       Research council which is one of the main agencies through which the
                       government supports medical and clinical research is currently funding
                       one programme of research pm Sarcoidosis at the university college of
                       London. This supports a large portfolio of research on inflammation and
                       inflammatory conditions

                       Basildon Hospital implemented changes for Sarcoidosis Awareness by
                       using a sufferers Patient story to clinical colleagues, and taken to
                       Clinical Forum as an education tool to raise awareness of Sarcoidosis
                       amongst other clinical specialties.

9th July 2009 - Atos Medical Services for Benefit Assessors established contact
regarding the lack of knowledge within their assessors.

                       S.A.S is currently scrutinizing the benefits system and has put both ESA
                       (Employment Support Allowance) and DLA (Disability Living Allowance)
                       processing and information carried on the disease. With the help of one
                       of Essex MP’s John Baron we aim to meet with DLA head office early
                       Next Year.

23rd July 2009 - Established Contact with London Brompton Research regarding the
                        costs and what they are hoping to achieve with the research. S.A.S has
                        not received a reply as of yet and is being currently chased up every
                        week.

28th July 2009 - MP contact regarding Benefit Claimant Matter and Sarcoidosis and
Procedure issues.

30th July 2009 - Freephone helpline Number launched and activated. People available to
                        talk from 9am to 9pm Mon- Fri. Sat-Sun 9am-6pm (GMT Time zone)
                        S.A.S has received loads of Phone calls from Sufferers about the
                        disease and the next Support Group Meeting if there is one in their local
                        area.

31st July 2009 – S.A.S arranged a meeting with the South West Essex PCT. With
                         Delivery of a Health Care Plan which was held by Martine Caitlan
                        (Chairperson) with the sector of Long term conditions. PCT has
                         proposed a GP Workshop for Sarcoidosis. To which the S.A.S is
                         implanting a Presentation about how GP’s can see symptoms of
                         Sarcoidosis.

                         Sarcoidosis Awareness Society Website http://www.uksarcoid.org was
                         launched with more updates to come. The site is still under
                         Construction on some sections of it but it is due to be completed by
                         the end of this year. This website cover a lot of information on
                         Sarcoidosis such as the symptoms, test requirements, what S.A.S is
                         currently doing and what are the aims of S.A.S, also who are the
                         Trustees and how they come to create the Organisation.

                         S.A.S welcomed a new Medical Advisor Dr. Howard Branley of the
                         Whittington Hospital to the Organisation Due to his interest into
                         awareness of Sarcoidosis. He is giving some information that we will
                         insert onto the website when it is completed.

20th September 2009 - S.A.S welcomes aboard another Medical Advisor Professor Athol
                                   Wells of the London Brompton Hospital. This is due to his
                                   interest on researching on Sarcoidosis and conversations
                                   between Martine (Chairperson) and himself.

8th October 2009 - Uksarcoid.org receives the Sarcoidosis Golden Lifesaver Award. This
award is awarded by having the most and accurate information to
Sarcoidosis Sufferers.

11th October 2009 - S.A.S Essex area went to Swindon Half Marathon to help support
                               2 incredible people Daniel Wilkinson and Scott Hillier running to
                               raise money for Sarcoidosis. This story will be implemented onto
                               the Sarcoidosis Awareness Society Website.

                              S.A.S at this current time is in contact with Billericay Essex MP John
                              Baron who is helping raise awareness into the Job Centre and PCT
                              to make the benefits sector more understanding of Sarcoidosis
                              Sufferers.

26th November 2009 - S.A.S was contacted by BBC about a new program that is in pilot
stage and wants people who have not been diagnosed with
Sarcoidosis. For more information click here.

3rd December 2009 - Martine Caitlan and Charlotte Doggett went on their local radio
                                station which was presented by a fellow Sarcoidosis Sufferer. They
                                Discussed what Sarcoidosis is and the lack of Knowledge there is
                                in the medical profession. What it is like to care for a Sarcoidosis
                                sufferer and how to contact the organisation and when the local
                                support groups are.

14th December 2009 - Scott Hillier arranged a Sarky Curry Night which raised funds of
£1000 in total Thank you Scott for arranging this and to all the
people who attended for raising the funds towards research.

25th March 2010 -    S.A.S had a meeting with the Department of Work and Pensions
                               (DWP). This was to reorganise the information they had provided
                               to ATOS which was incorrect. They have agreed to redo all the
                               information by using the information from our medical specialist
                               Professor Wells.

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Disclaimer: This website is provided for general information purposes only. The information contained within this site do not constitute medical or pharmaceutical advice, which should be sought from qualified medical and pharmaceutical advisers.