The following presentation was given by Geoff Parr at the 2006 JTSMA conference.
We should be updating this article with pictures in the near future!
Anita Macaulay
I was flattered and honoured to be asked to come here today to give this presentation. Some of you from the early days of the trust will be thinking "Oh no, who invited him back", newer or younger members may be thinking, "who's he?" So I suppose I had better start with an introduction: -
The name is Geoff Parr, I'm a 50 something copper from Cardiff. My son David was diagnosed with type 3 SMA, also known as Kugelberg-Welander syndrome, when he was about three, back in the early eighties. Like many of you here I was a parent thrown into massive disorientation on being given the diagnosis. The comment of the physician who gave us the diagnosis went along the lines of "Oh dear, I'm not sure what that means but it is quite serious, don't go home and look it up, I'll make an appointment for you to see the Professor".
Well of course we went home and started to research. That was in the pre-internet days and it took us some time, but we eventually found the number for the Jennifer Trust and that led us to Anita.
My wife Zoë and I were hugely encouraged by talking to her. We attended the first conference and became one of the first contact families. I wrote up a report on the conference and sent it to Anita. Before I knew it she had talked me into editing Holding Hands. One of Anita's great strengths was her ability to motivate others, she would praise, persuade and talk all sorts of people into doing the right thing. I am sure that many of you present will bear witness to her powers. As for me, I was persuaded to be a contact family member, a trustee, vice chair and then chair of the trust. I gave a speech at the tenth anniversary, which was the forerunner of today's effort. After that I slid into the background, but am delighted and honoured to have been called back today. I don't want to repeat the excellent eulogy given by Craig Hamilton at Anita's funeral, but would like to add a bit to that.
I am going to attempt in 15 minutes to give a brief history of the trust and Anita's involvement. I have left out more than I have put in, but I hope it will give you an insight into where we are.
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So who was this Anita Macaulay? She was born in Stratford upon Avon to Ron and Pam Barnacle on 20th May 1957. She went to school locally at Stratford upon Avon Grammar School. I am told she was a bit of a teenage rebel, who went off the rails, smoking, going out with boys, etc. But she saw the error of her ways and went to Stratford College where she showed an interest in Food Science, which led to her being employed firstly with United Biscuits and then with Elizabeth the Chef.
She was their food technologist, and was apparently very strict in enforcing hygiene rules on the workers, whether she was really nicknamed "Attila" I don't know.
Her first husband was a policeman, a copper like me, but that wasn't to last. She then married Ken Macaulay, a special constable who wanted to join the regulars, but never achieved that aim. In September 1984 they were blessed with the birth of a daughter, Jennifer
Unfortunately they were soon to discover that Jennifer was affected by type 1 spinal muscular atrophy, and her life was inevitably short. The task of giving this diagnosis fell to Professor Victor Dubowitz, who spoke to you earlier, and who has been a long-term patron of the JTSMA. He is another of Anita's recruits.
Anita found that at that time there was little known about SMA or support for families affected, and vowed at Jennifer's funeral to change that. She soon recruited her sister Stephanie, a fellow mum, Maria Brice, and Pam and Ron, her mum and dad, and set up the Jennifer Trust in spring 1985. The office was in their spare bedroom at the time.
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Anita was always good at asking for things and chasing sponsorship. An early helper was George the florist, here in Wellesbourne.
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She secured sponsorship for our first conference in 1987 from her employer, United Biscuits, Boots, IDC, Pressavo and Children in Need. That was a memorable event, which I was pleased to attend. One feature that remains with me is the presence of Salvo the clown.
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In 1986 the trust had applied for charitable status, which was awarded in 1987 (charity number 327669). At that time our annual turnover was £4,362, as opposed to last year when it was just over the half a million mark.
Anita was actively involved in fundraising throughout, and here we see her with one of our early money-spinners, the Teddy Bear lottery.
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Anita was always willing to take the first step, and sometimes this was advantageous. Here she is undergoing the rigours of a facial administered by the Muscular Dystrophy Group's Phillipa Harpin at an early conference as part of a Mum's de-stressing workshop.
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The next slide is the "after" photo, judging by the smile it wasn't an ordeal.
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The Jennifer trust continued to grow, and in 1991 we employed our first member of staff, Heather Brown.
Heather Brown
She and her family have been great friends to the trust. She has been involved and working with us for many years, Dave her husband has organised and run zillions of children's outings and raised lots through his membership of the local Lions club.
The following year Anita left her full time job and became our second employee.
Meanwhile, Anita and Ken were desperate for another child, but due to the lack of pre-natal diagnosis at the time were unwilling to risk the heartbreak of losing another baby. They sought to adopt a child, but due to Anita's dedication to the JTSMA they were turned down at first.
The powers that be felt that such an adoption would lead to the child being a substitute for Jennifer and not be loved for himself or herself. Fortunately after many years persistence they were successful and in 1993 adopted Stuart, who was nine months old at the time.
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Unfortunately the stresses and strains of their life proved too much and Ken and Anita parted company a few years later.
Anita continued her work with the JTSMA, as director, friend to many, and inspiration to all. She didn't always have the best of health herself. She was hospitalised on a couple of occasions with various ailments, mainly arthritis related, but always bounced back and returned to the helm of the JTSMA.
In 1995 we celebrated our 10th anniversary. As well as the conference we held a memorial service for all those we had lost. I was fortunate to have the honour to assist in reading out their names at the service. At conference we had a special cake, courtesy of Steve Balmer from Elizabeth the chef, pictured here with Anita, Craig Hamilton and Thomas Buckman, one of our type two children.
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The trust continued to develop, and new fundraising ideas kept springing up. Here is a photo of the first "Holding-Hands-athon in 1998.
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The fellow on the left is David ?. who played the caretaker in the first Harry Potter film. Next is a somewhat bemused member of the hotel staff, Steve Balmer from Elizabeth the Chef, Maureen Beckett a local MP, Anita, Dad Ron, Mum Pam (obscured by balloons), Lyn Barnett, a friend and recruit, and Mike Squire, a true gentleman and active supporter until his demise not long after this event.
The charity carried on from strength to strength, Anita always at the fore, as shown when she led a fire-walking charity stunt in 2003.
Anita Firewalking
Anita continued to inspire and attract others, and activities such as the contact family network continued to flourish, as shown from this photo of a contact family weekend in 2003.
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The last public appearance Anita made was with Heather at "Fit for life" 50th anniversary concert at the Royal Albert Hall in May of this year where they picked up an cheque for £36,261.96, which had been collected from keep fit clubs throughout the previous year on our behalf as their nominated charity.
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It was a great shock to us all when she suddenly succumbed to a sudden illness later that month. I was away participating in the Police National Offshore Sailing Championships at the time I heard, where I fractured my humerus, which explains my appearance in a sling today, and also explains my absence at her funeral.
Those are a few words on Anita and the trust. In 15 minutes I can give neither justice, but I hope I have conveyed something of our past and the importance of Anita's contribution.
As for the trust I am sure that it will continue to grow, while continuing to offer support to all who are affected by SMA.
The extent of our effectiveness is shown by the messages for Anita on our website, There are over 180 messages there, from all parts of the UK and America, Australia, Bolivia, Canada, France, Germany, Hong Kong, Ireland, Italy, Netherlands, Poland, Sweden, Ukraine and Venezuela.
Anita was a fine figurehead and driving force. As I have pointed out she was excellent at recruiting others. I am sure that the team that are currently in situ will continue her good works.
It is a mark of Anita's character that she was able to generate so much dedication. All of us are here today because of the vow that Anita made at Jennifer's funeral all those years ago, We owe it to them and ourselves to keep the charity going, to help, advise and care for all those affected by S.M.A. for as long as we need to do so.
Thank you for your patience. | 
