Juliet was the youngest of our four children. She was lovely, loving and much loved. She was born in 1970. Married at the age of 21 and four years later pregnant with her son Max. At that time she had begun to tremble. She was diagnosed incorrectly as having MS. Max was born in April 1995. One year later Juliet was diagnosed at the National Hospital for Neurology and Neuro-Surgery as having Nuclear Vertical Gaze Palsy.
While on a visit to our home in Norway, our very good friend Richard Rogerson (of whom more later) undertook some research on our behalf to ascertain more about this condition and to find out whether a support group existed. This led us on our journey home to Sussex making a detour to Scotland where we had arranged to meet with Jim and Susan Green to learn more about Niemann-Pick.
We were presented with a great deal of highly impressive medical detail and terminology and left Howick feeling despondent and confused.
By the end of the year, having become a member of the support group’s management board and having learned that there was no formal provision for fundraising, I offered to take on the role of fundraiser which was accepted, perhaps with some suspicion and reluctance.
At this time also the group operated under the aegis of the Research Trust for Metabolic Diseases in Children. I was not happy with the levy of 10% being imposed by the RTMDC on all funds raised by the group and consequently I began to agitate for the group to become officially registered with the Charity Commissioners. Registration subsequently took place in April 1997.
In the meantime, being concerned to strengthen the management committee I persuaded my friends Richard Rogerson and Sue MacPherson, both of whom had no family ties with the group, to bring their respective skills and knowledge to support the group. They both agreed and respectively became Vice Chairman and Treasurer. Several years later, again at my instigation, my friend Peter Carlton Jones, formerly Head of Public Affairs for Anglo American, was appointed to the Board of Trustees with responsibility for PR matters.
So far as the credibility of the group in the eyes of the general public was concerned, I felt it was important that we should have a team of distinguished patrons. So with the agreement of the board, I contacted a number of different people- mostly friends- many of whom accepted the invitation to become a patron. Those who did being the Earl Cairns, then the Chairman of BAT Industries, the company for whom I worked as Head of Personnel before my retirement and Professor Martin Rosser, Juliet’s consultant at Queen Square. Others who accepted were Sir Robin Catford, formerly on the staff of Margaret Thatcher at 10 Downing Street, Dora Bryan, actress and comedian, Dominic Walker,- Bishop of Monmouth, Lord Bassam of Brighton, then a Whip in the House of Lords, Nick Mathias, director of IMG Artists and Guy Johnston, award winning international cellist- all friends of my wife and myself.
All these patrons have in their own way not only added to the credibility of the group but have helped in many different ways with fundraising.
Over the years, since 1996, our fundraising activities have been many and varied. From being very much a one man band, I was gradually able to persuade more active members of the group to become involved and this was an extremely welcome development.
Apart from appeals to Charitable Trusts, Institutions, businesses and Government, fundraising activities have included the following:-
Donations including in memoriam donations, birthday and anniversary gifts (ranging from £1 to over £5, 000), sponsored events (e.g. walks, triathlons, marathon, cycle rides, parachute jumps, swimmathons, etc etc), jumble sales, Christmas sales, fashion shows, garden parties, charity lunches, whist-drives, coffee mornings, auctions, raffles, sale of donated gifts (e.g. paintings from reputable artists), lectures, talks to schools and rotary clubs, sale of our own charity Xmas cards, collecting boxes, appeals to golf clubs and, very significantly not only from a fundraising point of view but also from a raising of our profile point of view, series of concerts.
Early in 1999 I arranged for an explanatory video, introduced by Dora Bryan, to be made professionally and to be used for educational as well as fundraising purposes. I expect this has become very dated now but it proved very helpful at the time.
Fundraising has enabled the Group to meet its core expenses, produce a regular Newsletter, maintain a telephone helpline, subsidise the annual family conference and regional conferences and most importantly to fund the research project at Addenbrookes Hospital, to employ a Specialist Support Nurse and a National Development Manager (now the role of Chief Executive, held by Toni Mathieson).
After spending the last 18 years of her life in a care home Juliet died on the 26th August 2017.
A total of over £1,000,000 was raised during my time as Fundraising Coordinator.