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History of the TSA

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The Tuberous Sclerosis Association (TSA) has a long and proud history of supporting the Tuberous Sclerosis Complex (TSC) community in the UK.

Launching in the 1970s as a round-robin letter for a small number of TSC families, the TSA has since grown into the professional group that it now is.

Through our small number of salaried team-members, determined Trustees and passionate volunteers, the TSA continues to consistently punch above its weight as a world-leading authority on TSC, whilst never forgetting its family-focused and community-driven roots.

As we approach our 45th birthday, we hope to continue to be at the centre of TSC support, research, awareness and education for many decades to come.

History of the TSA by year

Three mothers of children living with TSC – Ann Hunt, Esther Galbraith and Jean Willson – begin to write regularly to each other from different locations in the UK about the impact of being affected by TSC.

At this point in time, TSC is not well understood and no UK family representation exists.

From their initial round-robin letter, Ann, Esther and Jean lead in the formal launch of the TSA in November 1977. Charity status for the group is achieved the following year.

As the membership of the TSA increases, the need for a newsletter to communicate to all families is pressing. The TSA’s first Scan newsletter (now our magazine) is published in 1978. Scan is coined after the ‘very sophisticated’ new machine that allows multiple copies of a document to be quickly reproduced.

Areas of the TSA beyond family support that will become vital to the charity – events, research, education and grants – begin to gather greater focus.

In 1979, the first Education and Research Fund is created, with the first TSC Research Appeal coinciding with the first TSA fundraising programme. Three years later, the first research grants are offered.

In 1980, the TSA’s first family conference is held, with the first benevolent fund established quickly afterwards.

Medical education also becomes a priority in this era, with the first TSA medical brochure for TSC published in 1983. An award-winning British Medical Association (BMA) film on TSC – the first film at the BMA on TSC – is released the following year.

Midway through the 1980s saw the first International Research Symposium for TSC, a landmark milestone for research and education of the condition. The following year, the inaugural meeting of Tuberous Sclerosis International signified the growing importance of international workings and partnerships between different TSC groups.

In 1987, the TSA celebrates its 10th anniversary at the House of Commons, hosted by Edwina Currie MP. After only a decade, the TSA has achieved a significant amount.

The focus on gathering families affected by TSC continues, with the TSA Family Weekends launched in 1988. This event continues to this day, in the form of TSA Family Fun Days.

In 1991, the TSA employs its first salaried member of staff, with Janet Medcalf named as Head of Support Services. In the same year, the first dedicated NHS TSC Clinic launches in Leeds.

Towards the end of the 20th century, two of the most important breakthroughs in TSC research to date were made – the identification of TSC1 (in 1997) and TSC2 (1993), the genes responsible for the onset of TSC. The TSA is proud to have helped fund the work in identifying TSC1 and TSC2.

NHS TSC Clinics across the UK continue to launch, with the Northern Ireland clinic founded in 1996.

The first Outlook group, an annual event for adults mildly affected by TSC, takes place in 1995. Outlook continues to this day with a committed and passionate following.

In 1998, the first international guidelines on the diagnosis, care, treatment and management of TSC are released. The international guidelines are a milestone to establishing more concrete, equal and efficient care for people living with TSC.

With the start of the 21st century came a key moment of the setup of the TSA, with the first TSA Advisors, Janet Bower and Harriet Spencer, appointed to help support and advise the TSC community.

2002 saw the TSA celebrate its 25th birthday at 10 Downing Street, hosted by Cherie Blaire (nee Booth) QC.

In 2003, The impact of TSC on the lives of individuals and families was highlighted on television, first with the TSA represented as the National BBC Lifeline Appeal for the year and then with William Davis starring in the groundbreaking Channel 4 documentary series ‘Born to be Different’.

The TSA’s position at the forefront of TSC research continues, with the TSA hosting the International TSC Research Conference in 2000 and again in 2004. New discoveries and research, including randomised controlled trials of potential treatment options, continue.

In 2006, the TSA and TSC community is struck by the sad passing of Janet Medcalf, the first salaried TSA team-member and key individual in the growth of the TSA.

The growth and size of the TSA by the time of the early 2010s led to the necessity of appointing the charity’s first Chief Executive Officer (CEO). Jayne Spink is named TSA CEO, coinciding with an updated rebranding of the TSA to mark a new era for the charity.

TSA support groups across regions and UK nations were launched from 2013, a fundamental area of the TSA’s support for the next few years.

In 2014, the TSA and TSC community were hit with the very sad passing of Ann Hunt MBE, joint-founder of the TSA as part of the initial TSC family round-robin back in 1976 (38 years previous).

A landmark British Medical Journal education module for TSC was launched in 2014. The module remains very popular, having been completed by thousands of healthcare professionals.

In 2015, the TSA was involved in the International TSC Research Conference once again, co-hosting the event and cementing its place as a leading TSC voice once again.

Between 2016 and 2018 the TSA turns its focus towards advocacy and campaigning for access to Everolimus for people living with TSC. Following passionate TSA campaigning and the support of the TSC community, Everolimus is recommended for a number of TSC-related issues in Scotland by the Scottish Medicines Consortium and England by NHS England.

In 2018, the first UK-specific guidelines on the diagnosis, care and management of people living with TSC were released. The guidelines enable UK clinicians to offer care that is more suitable to a UK-setting compared to the previous international guidelines. The TSA released a special summary of the guidelines, shared across the community and NHS TSC Clinics.

Since 2019, the TSA has had a new five-year strategy for 2019-2023. The strategy sets out the aims of the TSA to reach more people, drive more research and secure the long-term financial stability of the charity.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.