T IMELINE Mike Michael IT Consultant, UKTS Trustee ( ) 1958 George Constantinou Finance Specialist, UKTS Trustee ( , ) 1957 Pany Garibaldinos Driving Examiner, UKTS Trustee ( ) 1958 Andy Charalombos Senior Management in Retail, UKTS Trustee (since 1976 intermittedly) 195x Xena - XXX I apologise in advance for not having all the names. I promise to keep them updated as soon as I have more information Katie Loizi Administrator, UKTS Trustee (since 1982 intermittedly) 1968 Neelam Thapar Work Place Manager, UKTS Trustee (199X-?) 195X Susie Michael XXX, XXX

1970 £ UK Thalassaemia Society was formed. Yearly Membership fee £1. Antenatal Diagnosis 1974 UCH started Antenatal Diagnosis for Thalassaemia for women between weeks of pregnancy by taking a small sample of baby’s blood from the cord. There isn’t much written record of Thalassaemia during this time. If anyone has any story to share, please feel free.

T IMELINE Indian Community Link in London was established. Italian and Greek patients expressed wishes to have closer links with UKTS. UKTS assisted parents and patients in India to start their own society. Andy Paul, who represented Cyprus in the Eurovision Song Contest made a guest appearance at the Summer D&D. Leaflets on Thalassaemia are now available in Asian Languages (Urdu, Hindi and Gujerati) from UKTS UKTS issued cards for patients to carry with them in case of an accident. Literature for Thalassaemia were requested not only by individuals but also by Health Authorities. Birmingham Branch “Kypriaki Estia” was established with 3 member committee UKTS Membership fee increased to £2. UKTS launched the logo of a boot to “stamp out Thalassaemia”. UKTS Patient representative on the committee increased to 2 members. Turkish Appeal from UKTS for Turkish speaking volunteers for publication in Turkish newspaper. 8 World’s first early antenatal diagnosis for Thalassaemia at 8 weeks of pregnancy was done in UCH The Antenatal Diagnosis of Thalassaemia for pregnant mother between weeks of pregnancy in UCH was under threats to be closed, UKTS fought the decision and it was saved. irst bone marrow transplantation for Thalassaemia was carried out in USA. First bone marrow transplantation for Thalassaemia was carried out in USA “News Review” UKTS first newsletter debut in March. UKTS Committee Members included 1 patient representative There are about 300 Thalassaemia Major patients in Britain. S. Africa 1985 UKTS established links with Thalassaemia Society in S. Africa. Mentioned in News Review: “… we believe now more than ever, that the work of our society is extremely important and we must continue with more vigour and enthusiasm …”. Thalassaemia International Federation (TIF) Representatives from UKTS witnessed the creation of Thalassaemia International Federation (TIF) in Milan, Italy; and form one 6 th of the founding members which included Cyprus, Greece, Italy, Pakistan and USA).

1986 Fire broke out at Society office in Nightingale Lane, n8. Meetings continued to be held fortnightly at a committee member’s home. Up to date report on the development of the oral chelator was sought in earnest by hundreds of scientists around the world. UKTS hosted a TIF conference for the founding members in preparation for the official launch later in the year. TIF launched in Cyprus. TIF launched in Cyprus. Mr C Papageorgiou elected President. EMLA cream available in Britain, introduced for routine use in Thalassaemia Units UKTS Membership fee increased to £5, a part time staff was employed with the prospect of further recruitments. UKTS lobbied at the House of Commons – Proposed amendment to the Abortion Bill. Leicestershire launched Thalassaemia Support Group. “News Review” announced the birth of Linda Patsalides’s daughter!!! Well Done. The Tablet Research Project 1987 The Tablet Research Project was launched in earnest. A target of £200,000 was set. A series of fund raising events were organised. Theatrical play, Wrestling, Carnivals, Disco Nites, Gala D&D, Barn Dancing, Country & Western Music Festival, just to name a few. £16750 was raised in first 3 months! By December a total of £231,000 was raised. UKTS writes to Health Minister to obtain exemption for prescriptions. Clinical trial of L1 started at Royal Free Hospital. LANCET published an article that shown an oral drug CAN replace the desferal injections. Short film directed by Peter Moore on Thalassaemia titled “Blood Ties” aired. Medical Panel was formed. BBC BBC1 ran an interview with UKTS President and patient highlighting UKTS and problems faced by Thalassaemics. Antenatal Diagnosis8-9 Antenatal Diagnosis for Thalassaemia can now be carried out at 8-9 weeks of pregnancy dying Patients are still dying from iron overload, it was so difficult to comply with the Desferal injections. eventual cure The idea of Gene Therapy being the eventual cure for Thalassaemia was mentioned at Thalassaemia conferences. UKTS participated in the genetic interest group meeting held at St Mary’s. Oral Chelation in the Treatment of Thalassaemia and Other Diseases First Oral Chelation in the Treatment of Thalassaemia and Other Diseases was launched in London.

T IMELINE 1990 Ciba-Geigy announced at the 5th TIF meeting on Thalassaemia (1993) that they have decided to discontinue development of L1. UK Thalassaemia Society, 20 years old and still looking for The Cure 1996 UK Thalassaemia Society, 20 years old and still looking for The Cure. George Michael A panel of Patrons is created, with George Michael first on board. UKTS funded research into using MRI to measure iron in Thalassaemics. UKTS granted lottery fund for Asian Awareness Campaign UKTS granted lottery fund for Asian Awareness Campaign. UKTS protested against the exorbitant registration fees at TIF’s Conference in Malta and staged an attendance without registering. UKTS moved into new purchased premises at Southgate and will operate a charity shop UKTS launched website the cure 1999 At close of the millennium UKTS still no where near a breakthrough for the cure for Thalassaemia. AprilSeptember 1994 UKTS organised first National Thalassaemia Conference in Leicester in April; followed by TIF Conference in London in September. “Tied for Life” poster launch. 7 patients UKTS Committee Member has 7 patients on board. New Thalassaemia Unit opened at the Whittington Hospital Office opens 9am to 5pm, Mondays to Fridays. UKTS lobbied for less painful and positive methods for patients to use Desferal. A rejuvenating cream can be ordered from the Society to help soften the lumps around areas used for Desferal injection. UKTS negotiated for further supplies of L1 and ensured the trial continues. There are now 700 Thalassaemia Major patients in the UK UKTS and London Greek Radio collaborated and organised a Blood Screening Day. 1991Membership Fees increased to £7 for annual and £70 for life. Yersinia was discovered a threat to patients on Desferal. Urgent information disseminated to all Members. Support Group for siblings of Thalassaemics set up. Launch of Asian Video Launch of Asian Video, tying in with Launch of Thalassaemia Awareness Week 18 to 23 March. Interferon was used on Thalassaemia patients with Hepatitis C UKTS organised the first 1-day seminar on Thalassaemia. UK Thalassaemia Register 1990 UK Thalassaemia Register set up by Dr C Moisley, Dr B Modell, Dr P McKeigue.

T IMELINE UKTS launched ‘Standards for the Clinical Care of Children & Adults with Thalassaemia in the UK’ UKTS celebrated 30 th year. Exjade was launched. UKTS launched personal organiser UKTS and Sickle Cell & Young Stroke Survivors Group jointly organised Parliamentary Meeting All Party Parliamentary Group on Sickle Cell & Thalassaemia held first meeting in Westminster UKTS held first ever Ministerial level meeting Dr B Wonke was awarded OBE. Sr E Prescott presented with NHS Champions Awards UKTS has a new logo. UKTS fights the media on the image painted by Hashmis’ that Thalassaemia is ‘Terminal’ UKTS celebrates 25 th year. UKTS organised 1 st Compliance Workshop in Birmingham. Elaine joined UKTS UKTS funded a 3 year research project on Gene Therapy headed by Dr M Antoniou UKTS elected its first patient president. UKTS Contributions towards Research £ 5,000 Towards the development of the pump £ 27,500 Towards the research study into the "Growth and Development of Thalassaemia Patients". £ 610,275Towards the development of the oral chelator (L1) "Deferiprone“ £ 30,285Two year study into "Intensive iron chelation treatment in Beta Thalassaemia Major" £ 57,500Total towards other oral chelation products cp94 and further L1 studies £ 53,616Prevalence transmission and treatment of Hepatitis C Infection £ 43,600 Total for MRI research £ 25,888X-Ray Fluorescence (XRF) and in-vivo evaluation of iron levels in beta thalassaemia patients £ 24,000Studies into the role of iron overload and chelation in bacterial infections in thalassaemia £ 24,668Studies into "The Role of Hydroxyurea in Thalassaemic Disorders" £ 60,115Assessment of novel beta-globin transcription units within retroviral/lentiviral and AAV vectors for gene therapy of the haemoglobinopathies. £ 64,940Research into preimplantation genetic diagnosis in thalassaemia £ 66,000For the purchase of medical equipment and products for various hospitals and thalassaemia units in the UK £ 20,000Education of at risk communities, through ethnic radio, television, magazines, newspapers and website (per yr) £ 289,478Asian Awareness Campaign 1997/2000 £ 23,384 Maintenance of the Thalassaemia Register £ 20,000 Website and publications £ 16,000 Patient Held Record £ 20,000 – 30,000 Targeted workshops and patients conference (per year)

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