Anne Carter


Tom & I have been very much part of the fabric and tapestry of the Tuberous Sclerosis Association for 40 years – since our daughter Sally-Anne was diagnosed with the condition at 12 weeks of age.

I was inspired, through a sense of helplessness and hopelessness, to take up the baton to commence fund raising for the Association in 1978 and can honestly say that it become my complete mission for 7 days a week and every waking hour until I retired as the Association’s Head of Fund Raising and Communications 5 years ago having raised a little over £11million.

Tom, with his parallel involvement with the Association, has been alongside me continually in all this work.

Below is a summary of my involvement:
•1979 Anne & Tom Carter commenced TS fundraising in earnest and launched the first ever TSC Research Appeal in conjunction with BBC Radio Nottingham, BBC TV, Nottingham Forest Football Team & various celebrities culminating in an ‘Appeal Day’ - December 6th 1980 when £50,000 raised in a day providing the platform for future research.
We started out with a coffee evening at home November 1979 raising £300. Inspired by our initial success & encouraged by many friends & mindful of dear Sally’s helplessness we then launched ourselves into a massive local/regional campaign, spurred by the legendary radio and TV presenter Dennis McCarthy MBE, involving numerous BBC radio interviews developing a relationship with the listeners and a working bond with the BBC. On the day itself, 6th December 1980, 10,000 people thronged the Market Square in Nottingham to bring their Appeal envelopes to hand over to Brian Clough, Peter Taylor & the Nottingham Forest football players, actor Richard Todd & Everest climber Doug Scott. The traffic was brought to a halt & the whole ceremony was broadcast live on BBC Radio and TV. Barclays Bank Market St closed their branch for the morning and the bank clerks donated their time to act as ‘tellers’ in the Council House. Taking place on the steps of the Council House the event started with an interdenominational service & blessing of Sally, all those with TS & the research work that was to commence. Even the Rabbi sent a message which was read out as he wasn’t able to be present. The Salvation Army played and many were in tears – the atmosphere was electric & very emotive. By 12 noon £50,000 had been raised for TS research and by the beginning of Jan 1981 the total had risen to £62,000.
The BBC attached such importance to this ground breaking event that they produced a half-hour programme and radio tape ‘50,000 Thanks’ which was entered for the Sony Awards.
Well, that was the beginning of the story. My motto is ‘never leave a stone unturned’, so as you can imagine this has been 40 years of complete dedication.

•1982 First research grants made as a result of the Nottingham Appeal. International Research Symposium in Nottingham, organised by Anne & Tom Carter in conjunction with Sally’s consultant, Dr David Mellor, Paediatric Neurologist with funding from the Appeal.

•1985 First BBC Radio 4 Week’s Good Cause Appeal for TSC with Terry Wogan organised by Anne Carter.

•1985 International Research Symposium, Nottingham (organised by Tom & Anne Carter) led in 1986 to the inaugural meeting of Tuberous Sclerosis International which brought together representative groups from around the world (organised by Anne, Tom & Anne Hunt.)

•1987 TSA’s 10th anniversary celebrated with an event in the House of Commons hosted by Edwina Currie MP (organised by Anne Carter). The evening of the event Edwina appeared on ‘Question Time’ and praised the work of the TSA ! £1 million TS Research Appeal launched at Press House in London together with celebrities Edward Petherbridge & Emily Richards (Shakespearean actors). Linkage of TSC1 gene to Chromosome 9 funded by TSA grant.

•1988 Family Weekends launched. (I succeeded in getting funding for these, initially from BBC Children in Need & subsequently from Trusts.) First grant for DNA research. International Research Symposium in Nottingham, organised by Tom & Anne.
•Jayne Torville & Christopher Dean – early Patrons of the TSA – met TS families for backstage photo opportunities at Wembley, Glasgow & Norwich during their UK ‘Championship Tour’. (Anne Carter organised)

•1991 First dedicated TSC clinic opened in Leeds. (Organised clinic opening with TV, radio & press coverage.) International Research Symposium held in Nottingham, again organised by Anne & Tom.

•1992 First Professional Study Day for healthcare professionals and scientists (secured funding for this.) Bath TS Clinic opened (organised clinic opening with Professor John Osborne – Duchess of Beaufort was celebrity. Mass media coverage achieved in the SW). £1.8 million legacy from estate of H R Leach gave financial stability to TSA. (via our dear friend Graham Harker & following media coverage in the SW). TSC2 gene linked to Chromosome 16. Second employed staff member (Anne Carter -Appeals and Publicity).
Tuberous Sclerosis Europe launched with the EU in Luxembourg. (I sought the support of a local MEP & managed to orchestrate the launch of TS Europe in Luxembourg. The EU funded leaders of all European TS groups to attend & paid for their accommodation. The launch took place in the main assembly room & full multilingual translation was provided. I was invited to do a BBC radio interview from the studios in Luxembourg with BBC East Midlands keeping the listeners in touch.

•1993 The first TSC2 gene on chromosome 16 identified and cloned, research part funded by TSA. (I organised Press Launch in London.)

•1994 Behaviour Clinic opened in Cambridge. (I organised Clinic opening again achieving good media coverage including regional TV. Lord Butterfield of Sedgeford was the celebrity.) First Northern Ireland Family Weekend - achieved funding for this.

•1996 TSC Clinic launch in Northern Ireland. (Again, organised Clinic launch with good media coverage.) International Research Conference held in Bath (funding achieved for this.)

•1997 Second gene (TSC1) identified on Chromosome 9 leading to the first diagnostic blood test for TSC and research into molecular mechanisms. (Organised Press Launch.) TSC Clinic opened in Edinburgh. (Organised Clinic opening in conjunction with Dr Mary Porteous – good media coverage including TV).

•1998 BBC Radio 4 Week’s Good Cause Appeal presented by Nick Higham (organised this).

•1998 organised 21st anniversary gala fundraising ball at Croydon Park Hotel.

•1998 TSC Clinic opened at St George’s Hospital London. (Organised the opening in conjunction with Dr Anand Saggar – Dame Julia Cumberlege was celebrity.). 1998 & 1999 enlisted the help of Sophie Rhys-Jones (Countess of Wessex) & her PR company RJH, to work with us to increase TS awareness and help us launch the £5 million Appeal to mark our 21st Anniversary. This was hugely successful, in many ways because Sophie became engaged to Edward during this time & was then planning their wedding. The media was always hungry for news! 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 on the 6 o’clock news! Apart from Sophie, other celebrities included Vanessa Feltz and Tanya Briar. 90 parents and children (TSC children and sibs) were invited to attend from all corners of the UK. Sophie negotiated free seats for all for the matinee performance. Professional photos were taken of the children with Phillip, the cast and celebrities. Huge regional media coverage was achieved. Phillip and the cast hosted a TSA 21st Anniversary party in the theatre after the performance.

•1999 Three videos launched. (Sourced the production company & worked with Ann Hunt & Janet Medcalf to find suitable TS families & work up the script.)

•1999 TSA Siblings Celebrity Launch at Planet Hollywood, London with Dr Petrus de Vries and celebrities including the South African Rugby Team, Mr Motivator and Michelle Collins. (Organised this with the help of Sophie.) It was immensely successful. We even staged a concert which involved the sibs. & held sibs workshops & break-out sessions.

•1999 – we were the official collection charity for Trafalgar Square lighting ceremony.

•1999 21st anniversary Gingerbread Ted fundraising campaign featuring Claire from ‘Steps’, Sian Lloyd & Jane Asher’s recipe. A launch took place at the Dorchester Hotel, London followed by a meal at Hard Rock Café. (Worked together with Sophie on this.)

•1999 Paul Burstow MP tabled Early Day Motion in the House of Commons on TSC. (Organised this & involved the membership).

•2000 International Research Conference in Edinburgh. (Funding achieved.)

•2000 masterminded Scottish Zipline event

•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. (Organised by me.) Again, good media coverage.

•2000 TSA Ball Hampton Court Palace – Profit - £27,000 (organised by Angela Huber & I)

•2001 Two TSA Specialist Advisers appointed. (initial funding achieved) 'Practitioners Guide to TSC' for clinicians.(Funding achieved)

•2001 organised Mediaeval fundraising banquet at Warwick Castle.

•2002 TSC Protein research funded.

•2002 25th Anniversary Reception at 10, Downing Street, hosted by Cherie Booth QC. (organised by me.)

•2002 Second TSA Ball Hampton Court Palace (organised by me) – Profit - £26,567

•2002 TSA 25th Anniversary negotiated with McDonalds to provide 30 free TSA family parties throughout the UK.

•2003 Channel 4 TV ‘Born to be Different’ documentary featuring William Davis (TSC). (Marketing organised)

•2003 Mad Hatters celebrity children’s party at Grosvenor House Hotel, London in conjunction with London Taxi Drivers – organised for a number of TS families to attend.

•2003 National BBC TV Lifeline Appeal (Phillip Schofield) (organised).

•2003 TSA Patrons – Phillip Schofield, Hannah Gordon, Nick Higham and Evelyn Glennie. (organised)

•2003 Maggie Smith Challenge Award established. (organised)

•2004 International TSC Research Conference in Cambridge. (funding achieved) First clinical trial of Rapamycin treatment specific to TSC. (funding and press coverage achieved).

•2004 Third TSA Specialist Adviser appointed. (initial funding achieved)

•2006 TSA Ball HMS Warrior (organised). Profit - £27276

•2007 Appointment of Fiona McGlynn as Head of Development and Support Services (initial funding achieved.)

•2007 Appointment of TSA Specialist Adviser for Scotland (Initial & continuation funding achieved.)

•2008 TSA Ball King’s College Cambridge (organised). Profit - £19932

•2008 BBC Radio Appeal for TSC by Hannah Gordon (organised this.)

•2009 Channel 4’s ‘Born to be Different’ follow up programme of William Davis at 9 years of age. (Marketing organised).

•2012 Retired