History

The Tuberous Sclerosis Association (TSA) has grown from a round robin support letter for mothers, to a professional organisation that has catalysed international research leading to the first specified drug treatment for a genetic condition. The TSA has used the UK’s expertise and innovation in clinical research to achieve this in a very cost effective way.

Lauched in 1977

Launched in November 1977 at the Spastics Society in London with a membership of 50 families and funds of £25
1978 – TSA registered as a Charity and the first newsletter, TSA Scan was published July 1978, keeping families informed and in touch.
1979 – Education and Research fund created and fundraising for the first International Research Symposium in Oxford. Leaflets and information factsheets for members.

1980 – 1984

1980 – Launch of TSC Research Appeal Nottingham in conjunction with BBC Radio Nottingham, BBC TV, Nottingham Forest Football Team & celebrities. £50,000 raised in a day providing the platform for future research. Membership 217 families
1982 – First research grants made. Second International Research Symposium in Nottingham. Membership 320 families
1983 – Benevolent Fund established. First medical brochure.
1984 – First TSC Video winning BMA Bronze Medal

1985 – 1989

1985 - First BBC Radio 4 Week’s Good Cause Appeal for TSC with Terry Wogan.
1985 - Third International Research Symposium, Nottingham led in 1986 to the inaugural meeting of Tuberous Sclerosis International which brought together representative groups from around the world.
1987 – TSA’s 10th anniversary celebrated with an event in the House of Commons hosted by Edwina Currie MP. Membership 615 families. £1 million TSC Research Appeal launched. Linkage of TSC1 gene to Chromosome 9 funded by TSA grant.
1988 – Family Weekends launched. Volunteer Regional Representatives scheme commenced. First grant for DNA research. International Research Symposium in Nottingham.

1990 – 1994

1991 – First dedicated TSC clinic opened in Leeds. International Research Symposium held in Nottingham. Membership 950 families. First TSA employed staff member – Head of Support Services (Janet Medcalf).
1992 – Membership 1000 members plus. First Professional Study Day for healthcare professionals and scientists. Bath TSC Clinic opened. £1.8 million legacy from estate of H R Leech gave financial stability to TSA. TSC2 gene linked to Chromosome 16. Second employed staff member -Appeals and Publicity (Anne Carter). Tuberous Sclerosis Europe launched with the EU in Luxembourg.
1993 – The first TSC2 gene on chromosome 16 identified and cloned, research part funded by TSA. Family Care Worker appointed (Ann Hunt)
1994 – Behaviour clinic opened in Cambridge. First Northern Ireland Family Weekend.

1995 – 1999

1995 – Outlook group formed for mildly affected adults. TSA registered as a limited company.
1996 – TSC clinic launch in Northern Ireland. International Research Conference held in Bath. TSA website launched. TSC Talking Shop for Outlook members.
1997 – Second gene (TSC1) identified on Chromosome 9 leading to the first diagnostic blood test for TSC and research into molecular mechanisms. TSC Clinic opened in Edinburgh.
1998 – TSC clinic opened at St George’s Hospital London. Launch of £5 million TSA 21st Anniversary Appeal at the London Apollo Theatre, Dr Dolittle show with Phillip Schofield and cast with national BBC TV coverage.
1999 – Three videos launched.
1999 – TSA Siblings Celebrity Launch at Planet Hollywood, London with Dr Petrus de Vries
1999 Paul Burstow MP tabled Early Day Motion in the House of Commons on TSC.

2000 – 2004

2000 - International research conference in Edinburgh. Educational CD-ROM for clinicians. Educational training days for parents and carers.
2000 – TSA Sibs 2000 Encounter London Eye with Phillip Schofield. TSA website for siblings launched at reception at House of Commons with Dr Evan Harris MP alongside lobbying for better genetic testing. TSA Ball Hampton Court Palace.
2001 – Two TSA Specialist Advisers appointed. ‘Practitioners Guide to TSC’ for clinicians. Full Clinical Guidelines by TSA Medical Advisers on web site. Pospective long-term cohort study funded.
2002 – TSC Protein research funded.
2002 – 25th Anniversary Reception at 10, Downing Street, hosted by Cherie Booth QC.
2002 – Second TSA Ball Hampton Court Palace
2003 – TSC gene function research meeting sponsored by MRC, Wellcome Trust, Cancer Research UK, Biochemical Society, attended by molecular and cell biologists to discuss advances in understanding the molecular mechanisms of TSC. Consensus clinical guidelines on cognition and behaviour.
2003 -Channel 4 TV ‘Born to be Different’ documentary featuring William Davis (TSC).
2003 – National BBC TV Lifeline Appeal (Phillip Schofield).
2003 – TSA Patrons – Phillip Schofield, Hannah Gordon, Nick Higham and Evelyn Glennie.
2003 – Maggie Smith Challenge Award established.
2004 – International TSC Research Conference in Cambridge. First clinical trial of Rapamycin treatment specific to TSC. Third TSA Specialist Adviser appointed.

2005 – 2009

2005 – Clinical Guidelines published for the assessment of cognitive and behavioural problems in TSC
2005 – Appointment of Head of Administration
2006 – Establishment of Professional Advisory Board
2006 – Dr Chris Kingswood takes over from Ann Hunt as Head of Research, with Jane Cox as Deputy
2006 – TSA Ball HMS Warrior
2007 – Appointment of Head of Development and Support Services
2007 – Appointment of TSA Specialist Adviser for Scotland
2008 – TSA Ball King’s College Cambridge
2008 – TSC International Research Conference Brighton
2009 – First Radomised controlled trials of a M-TOR inhibitor (everolimus) for kidney and brain tumours