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)
1958 Andy Charalombos
Senior Management in Retail,
UKTS Trustee (since 1976 intermittedly)
1964 Mike Michael
IT Consultant,
UKTS Trustee (1987-2010)
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..
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.
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.
1981 The 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).
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.
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.
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.
1989 BBC1 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.
TIMELINE
1990
1990 UK Thalassaemia Register set up by Dr C Moisley, Dr B Modell, Dr P McKeigue.
1991 Membership 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.
1996 UK 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.
1997 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.
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.
UKTS Contributions towards Research
TIMELINE
£ 5,000
£ 27,500
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’.
2006 UKTS celebrated 30th year.
Exjade was launched.
UKTS launched personal organiser.
2007 UKTS and Sickle Cell & Young Stroke Survivors
Group jointly organised Parliamentary Meeting.
2008 All Party Parliamentary Group on Sickle Cell &
Thalassaemia held first meeting in Westminster.
2009 UKTS held first ever Ministerial level meeting.
Towards the development of the pump
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
£ 20,000 Website and publications
£ 16,000 Patient Held Record
£ 20,000 – 30,000 Targeted workshops and patients conference
(per year)
TIMELINE
2000
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Timeline of the UKTS - United Kingdom Thalassaemia Society