T IMELINE

1. TIMELINE 1950 1960 195x Xena - XXX XXX 1959 Katie Loizi Administrator, UKTS Trustee (since 1982 intermittedly) 1957 Pany Garibaldinos Driving Examiner, UKTS Trustee (1976-1993) 1968 Neelam Thapar Work Place Manager, UKTS Trustee (199X-?) 1958 George Constantinou Finance Specialist, UKTS Trustee (1976-1985, 1997-2010) 1964 Mike Michael IT Consultant, UKTS Trustee (1987-2010) 1958 Andy Charalombos Senior Management in Retail, UKTS Trustee (since 1976 intermittedly) 195X Susie Michael XXX, XXX I apologise in advance for not having all the names. I promise to keep them updated as soon as I have more information..

2. 1970 1974 UCH started Antenatal Diagnosis for Thalassaemia for women between 18-23 weeks of pregnancy by taking a small sample of baby’s blood from the cord. 1976 UK Thalassaemia Society was formed. Yearly Membership fee £1. There isn’t much written record of Thalassaemia during this time. If anyone has any story to share, please feel free.

3. TIMELINE 1980 1980“News Review” UKTS first newsletter debut in March. UKTS Committee Members included 1 patient representative There are about 300 Thalassaemia Major patients in Britain. 1981The Antenatal Diagnosis of Thalassaemia for pregnant mother between 18-23 weeks of pregnancy in UCH was under threats to be closed, UKTS fought the decision and it was saved. First bone marrow transplantation for Thalassaemia was carried out in USA. 1982 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. Appeal from UKTS for Turkish speaking volunteers for publication in Turkish newspaper. World’s first early antenatal diagnosis for Thalassaemia at 8 weeks of pregnancy was done in UCH. 1983 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. 1984 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. 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 …”. Representatives from UKTS witnessed the creation of Thalassaemia International Federation (TIF) in Milan, Italy; and form one 6th of the founding members which included Cyprus, Greece, Italy, Pakistan and USA).

4. 1987The 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. 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. Mr C Papageorgiou elected President. EMLA cream available in Britain, introduced for routine use in Thalassaemia Units. 1988 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. 1989BBC1 ran an interview with UKTS President and patient highlighting UKTS and problems faced by Thalassaemics. Antenatal Diagnosis for Thalassaemia can now be carried out at 8-9 weeks of pregnancy Patients are still dying from iron overload, it was so difficult to comply with the Desferal injections. 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. First Oral Chelation in the Treatment of Thalassaemia and Other Diseases was launched in London.

5. TIMELINE 1990 1990UK Thalassaemia Register set up by Dr C Moisley, Dr B Modell, Dr P McKeigue. 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, 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. 1992 UKTS and London Greek Radio collaborated and organised a Blood Screening Day. Ciba-Geigy announced at the 5th TIF meeting on Thalassaemia (1993) that they have decided to discontinue development of L1. 1993 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. 1994 UKTS organised first National Thalassaemia Conference in Leicester in April; followed by TIF Conference in London in September. “Tied for Life” poster launch. UKTS Committee Member has 7 patients on board. New Thalassaemia Unit opened at the Whittington Hospital. 1996UK Thalassaemia Society, 20 years old and still looking for The Cure. A panel of Patrons is created, with George Michael first on board. UKTS funded research into using MRI to measure iron in Thalassaemics. 1997UKTS 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. 1998 UKTS launched website www.ukts.org 1999 At close of the millennium UKTS still no where near a breakthrough for the cure for Thalassaemia.

6. UKTS Contributions towards Research TIMELINE £ 5,000 Towards the development of the pump £ 27,500 Towards the research study into the "Growth and Development of Thalassaemia Patients". £610,275 Towards the development of the oral chelator (L1) "Deferiprone“ £ 30,285 Two year study into "Intensive iron chelation treatment in Beta Thalassaemia Major" £ 57,500 Total towards other oral chelation products cp94 and further L1 studies £ 53,616 Prevalence transmission and treatment of Hepatitis C Infection £ 43,600 Total for MRI research £25,888 X-Ray Fluorescence (XRF) and in-vivo evaluation of iron levels in beta thalassaemia patients £24,000 Studies into the role of iron overload and chelation in bacterial infections in thalassaemia £24,668 Studies into "The Role of Hydroxyurea in Thalassaemic Disorders" £60,115 Assessment of novel beta-globin transcription units within retroviral/lentiviral and AAV vectors for gene therapy of the haemoglobinopathies. £64,940 Research into preimplantation genetic diagnosis in thalassaemia £ 66,000 For the purchase of medical equipment and products for various hospitals and thalassaemia units in the UK £ 20,000 Education of at risk communities, through ethnic radio, television, magazines, newspapers and website (per yr) £289,478 Asian Awareness Campaign 1997/2000 £23,384 Maintenance of the Thalassaemia Register £20,000Website and publications £ 16,000 Patient Held Record £ 20,000 – 30,000 Targeted workshops and patients conference (per year) 2000 2000 UKTS elected its first patient president. 2001 UKTS funded a 3 year research project on Gene Therapy headed by Dr M Antoniou. 2002 UKTS celebrates 25th year. UKTS organised 1st Compliance Workshop in Birmingham. Elaine joined UKTS. 2003 UKTS has a new logo. UKTS fights the media on the image painted by Hashmis’ that Thalassaemia is ‘Terminal’. 2004 Dr B Wonke was awarded OBE. Sr E Prescott presented with NHS Champions Awards. 2005 UKTS launched ‘Standards for the Clinical Care of Children & Adults with Thalassaemia in the UK’. 2006UKTS celebrated 30th year. Exjade was launched. UKTS launched personal organiser. 2007 UKTS and Sickle Cell & Young Stroke Survivors Group jointly organised Parliamentary Meeting. 2008All Party Parliamentary Group on Sickle Cell & Thalassaemia held first meeting in Westminster. 2009UKTS held first ever Ministerial level meeting.

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