Meet The Unique Trustees
Unique has a Trustees Committee of seven volunteers to support staff members who carry out most of the day to day work of the group. Let us introduce you to some of the committee.
Edna Knight MBE
I am Edna Knight, Unique’s Life President and a Trustee. I started the group with four other families back in 1984. I have been blessed with four daughters and in 2012 a little grandson Jack who is adorable. My girls are Wendy, Linda, Julie and Claire. Linda has a normal set of chromosomes, while Wendy and Julie have a partial duplication of short arm of chromosome 9. Claire, who is Jack’s Mum, has a balanced insertional translocation like myself. Wendy is 47, attends a Skills Development Centre and does work experience for a few hours a week in a local company which she really enjoys. Julie is 42 and works in an office doing a variety of tasks in many departments where she has made many friends. The girls have made good progress and are still achieving new things.
Hi , I’m Helen. My younger son Patrick had a profound speech and communication delay which lead him at be tested at the age of 4 years.
This found that he has a deletion 18p11.32p11.21. He also has moderate learning difficulties and some fine & gross motor skill issues.
Further testing has shown that my older son appears to have no chromosome abnormalities but that both myself and my father had 16q
and 22q duplications; neither of us had any significant issues. My husband and I were devastated by both the diagnosis for Patrick
and the way in which it was delivered. Finding Unique and getting that initial communication from Beverly was a lifeline and
subsequently I’ve been able to speak or email with other parents getting an 18p diagnosis. Professionally I’m a
Chartered Accountant and privately I’m a Cub Scout Leader and School Governor. I joined Unique as a trustee during 2014 because
I wanted to use the skills I’d learnt to help an organisation which helped me.
I have an 11 year old son Max with dup 9p(23-14) and del 9p(23.1-23.3) and a younger daughter. Unique changed our lives when we were told shortly after his birth of his diagnosis but also that they couldn’t tell us any more about how he would develop. Unique’s information and the family across the world which Unique put us in touch with a very similar chromosome disorder gave us hope by telling us all the things that he might do. As a former City lawyer, becoming a 'stay-at-home' mum was made more enjoyable by throwing myself into holding coffee mornings and other fundraising events for Unique. A few years later I became a Trustee of Unique and enjoy being involved in the planning of Unique's strategy and talking to the outside world about Unique’s great work.
Sally has held general management, marketing, and sales positions at some of the biggest brand companies in the world including Coca-Cola, Vodafone, and Allied Domecq. Formerly MD of Elizabeth Arden UK, she currently uses her skills consulting to companies on marketing and innovation. She has served on the board of Marks and Spencer Financial Services as a Non-Executive Director and has been an active Pilotlighter since 2006.
She became involved with Unique as part of her first Pilotlight project and was so impressed by the team and so inspired by the membership that she joined the board. You could say working with chromosomes is in her DNA - her father was a Professor of Genetics for many years.
In 1983 my partner, Peter, and I first met as founder members of a company designing technology for schools; 30 years later we still run the company. In 1990 our first child, Lucy was born with an unbalanced translocation (10p13pter-/dup5q35.2qter+) and I discovered that I carry a 5;10 balanced translocation. I contacted Edna and was met with great kindness and patience. I became a member of Unique’s management committee in 1993 and served as the first Chair of Unique during its transition from registered charity to a charitable company limited by guarantee. Our vision is of a society that values and embraces the diversity of rare chromosome disorders and supports, without prejudice, all people affected by them and the life choices they make.
Noni de Zoete
I am delighted to become involved with Unique. Our grand daughter Maya has a 10Q26.1 deletion, and after her diagnosis at one month old, I contacted the charity.
Beverly and her team gave our family such comfort and support and I decided to run the London Marathon for them.
I have been involved with a charity for the Elderly for many years, and was thrilled to be invited to become a Trustee for Unique.
As a grandmother I hope to represent those who watch how their children cope with the challenges and the joy of bringing up these special children.
Following completion of my English degree at Durham University, I took a teachers’ training diploma. During the course of that training I had many weeks of student teaching experience some of which was spent in a ‘special needs’ school (as it was then called). There for the first time, I encountered children with widely varying degrees of disability. It was memorable. Little did I know that a few years later both the memory and the experience would be hugely valuable to me when my own son was born with a learning disability.
Stephen is now almost forty but it was only three years ago that his rare chromosome disorder of 48xxyy was diagnosed. Had he born today, that diagnosis would have been procured much earlier. It finally brought together, however, many features about Stephen which seemed previously unrelated and somewhat random: born with talipes equinavarus, later a speech problem and the emergence of a learning disability, difficulty in carrying out complex instructions, serious issues not impacting as much as one would expect and so the list could go on.
In adulthood, Stephen has become a reticent but kind and caring man. Socially he is completely relaxed within the family and with family friends he has known for a long time. He does not cope well with change but lives, as is his wish, in semi supported housing where 24 hour help is at hand. Physically he has circulatory problems.
Once diagnosed, we googled ‘rare chromosome disorders’ . That was when we discovered Unique and the useful information and advice it puts out. It was my wish to support the Charity as much as possible and earlier this year I became a Trustee.
I initially became involved with Unique shortly after my second daughter, India, was diagnosed with an unbalanced translocation
(duplication 18q21.1 to qter, deletion 18p11.32). At the time she was three weeks old and had been admitted to hospital after struggling
to breathe. After several weeks we were told by the consultant that he felt the underlying cause of her problems was genetic.
I clearly remember the confusion we felt and unfortunately, because of the rarity of her condition, the medical staff were not
able to help us understand what this meant for India and her future. That was when my wife found out about Unique after
one of many long nights searching the internet. The help Bev and the team were able to give us was incredible, not to mention the
ongoing support of the Unique community. I was delighted when the opportunity came up to become a trustee of the charity
and get more involved. Outside Unique, I am a partner of Lincoln Private Investment Office, advising clients on their
investments and wider wealth.