Wendy - Trustee

Wendy Hocking (Chair)

Wendy’s first grandchild, William, was diagnosed with Kleefstra Syndrome just after his first birthday in 2014 and remembers the early days of his diagnosis well. She first heard of the Charity through Williams parents, Paul and Emma, as they found the information and support from the Charity invaluable. They attended both the 2015 and 2018 Conference and even managed to speak to Dr Kleefstra herself. They enjoyed the opportunity to meet other children and families in the same position as them and told Wendy all about it.

Wendy has Chief Executive experience in managing Charities, supporting people in need, such as homeless people and vulnerable families, and found by chance that the founder members, Chris and Fiona, were stepping back from their Chair and Trustee roles to concentrate more on their family. She immediately expressed an interest in supporting the Charity, to bring her expertise and passion of supporting families to help continue the fantastic work that Chris and Fiona, the original founders, have done to develop the website and support network.

She aims to use her connections and knowledge to ensure the families have access to relevant information, helpful support links, the latest medical updates, and the opportunity to meet other families with children and young people diagnosed with Kleefstra syndrome.

Vito Berzanskis (Treasurer)

Vito is the father of three boys, of whom the youngest, Freddie, was diagnosed with Kleefstra syndrome at the age of seven months. He found the compassion, help, understanding and information about Kleefstra he received from kleefstrasyndrome.org invaluable and as such, believes strongly in being able to give back. Originally from Lithuania, Vito has lived in Derbyshire for the past 20 years, qualifying as a solicitor in 2011 and is currently a director of an Agricultural Law Practice in Derbyshire. He is confident that the skills and experience gained within this role will be useful in helping families in the same way that the charity has helped his, and in raising awareness of Kleefstra Syndrome.

Anna Gibbs (Secretary)

Anna is the mom of Hunter (6) and Hazel (2). Hunter was diagnosed with Kleefstra Syndrome at 4 weeks old. He was born with a congenital heart defect, which prompted the early genetic testing.

Anna remembers the early days, feeling lost and scared for the future. Being a first-time mom, the early diagnosis was simply overwhelming. Making contact with other families that had gone through similar was the best support she could have hoped for. Feeling understood and having other parents tell you “you will be fine” and “you are not alone” helped getting through the tough first year.

Six years later Anna is excited the get involved with the Charity and help other parents to navigate a life with Kleefstra and tell families that “they will be fine”, because they will.

Jo Merry (Trustee)

Jo has three wonderful children with her youngest Matthew having been diagnosed with Kleefstra syndrome in February 2020. It was clear from the beginning that something was different with Matthew and even after the relief of an official diagnosis there remained many unanswered questions. The hospital consultant was limited in his answers to the family, simply due to the lack of information available and the small number of diagnosed persons within the United Kingdom. The meeting ending with a leaflet being handed over which had simply been printed from the Internet with further advice to seek out other families online for more support.

On the journey home from the hospital, Jo sought answers online in the hope to connect with anyone who had experience of Kleefstra syndrome. She found Kleefstrasyndrome.org and immediately messaged Fiona and Chris, the original founders of the charity. From the outset they were able to put her mind at ease and quickly defused the increasing worry, helping her family to feel less alone. Jo has found the online community is a great resource for questions and answers and has provided the opportunity to learn and comprehend more about what a life with Kleefstra syndrome is about, not only for Matthew, but his surrounding family as he continues on his journey through life. She is passionate about helping anyone who finds themselves in a similar position that their family once was, whilst also promoting and creating awareness of the syndrome and to strive and help others on their unique journey through experience and advice.

Barbara - Trustee

Barbara Roberts (Trustee)

Barbara heard about Kleefstra Syndrome through the Chair, Wendy Hocking, who she has known for many years, and when Wendy mentioned her work with the Kleefstra Syndrome charity, it raised her interest. Barbara’s older sister has a rare disease, Oculodentodigital dysplasia (ODDD) which she believes their mother also had on becoming aware of the symptoms. Barbara looked at the Kleefstra Syndrome website to understand more about this rare disease and the charity. She then asked about becoming a trustee of the charity.

Barbara is retired and believes her business experiences and volunteer roles would be useful in supporting a charity. Barbara started and managed her own franchise business in 1996 and sold it in 2016 and also worked for the franchisee for twelve years. Her role was to lead, support and provide training to existing franchisees and to train new franchisees in the management of their businesses.

Barbara loves to keep fit by playing badminton, going to the gym, and walking. She is chair at Stafford Badminton Club and at Stafford Walking Nerball Club. Playing with the members provides fitness and great friendships. Barbara also enjoys sewing, gardening and reading.

Barbara is happily married to Ian for over forty five years. They have a son and a daughter and three gorgeous grandchildren and the best times are when they can all be together. Making homemade pizzas with the grandchildren is now a family tradition.

Barbara is delighted to be working with all the trustees and members to continue raising awareness of Kleefstra syndrome.

Kate - Trustee

Kate Palmer (Trustee)

Kate is a retired doctor. After training covering all aspects of paediatrics she specialised in the care of newborn babies. For 25 years she worked as a consultant on a neonatal intensive care unit. Many of the babies she cared for had significant health problems in the newborn period and for some of them the problems became lifelong. Kate understands that the process of recognition of difficulties, their investigation and the formulation of a management plan can seem disjointed and frustratingly slow and may involve a bewildering number of people. She appreciates the difficulty of caring for a baby and his/her siblings whilst simultaneously adjusting to a new, uncertain future and the toll this may take on a family.

Kate hopes to utilise her experience to support the families of children and young people diagnosed with Kleefstra Syndrome.

Cath - Trustee

Cath Darlaston (Trustee)

Cath first became aware of Kleefstra Syndrome after her grandson Jack (born 2004) was diagnosed in February 2017. Jack was 12 at the time and Cath’s daughter Jo, single parent to Jack had tried to establish a diagnosis for him from when he was a baby as the family were all aware that Jack had additional needs. Jack comes to stay with Cath and her husband during school holidays, initially with his mum but latterly on his own, as he puts it “Jack Lockwood is having time with my grandparents”. Since Jack’s birth Cath, together with her husband, has spent a great deal of time with him. The family attended the Kleefstra conference in 2018 in Coventry. Cath completed a charity walk in May of 2023 from Skegness to Mablethorpe primarily to raise money for Kleefstra, naturally a charity close to her heart. It was following this that Cath became a Trustee for Kleefstra Syndrome UK in August 2023.

Cath’s professional background is in administration having worked extensively in healthcare for the Royal College of General Practitioners (a registered charity), a hospital Consultant, Hospital Manager (Modern Matron), Director of Planning for a Hospital Trust, and a Deputy Medical Director. Cath also worked as an administrator for a UK subsidiary of an American incorporated company who were a computer aided design/manufacture/engineering company. Cath is also a DJ for an online community radio station based in Skegness (started June 2023) a voluntary role that Cath enjoys immensely.

Courtney - Trustee

Courtney Helliwell (Trustee)

My name is Courtney Helliwell, I am a Local Authority Special Educational Needs and Disability (SEND) Team Leader, managing a team of SEND Officers who are handling the Education Health and Care Plans (EHCP) in all settings; mainstream, enhanced resource and specialist, across our authority from nursery to year 11.

However, my most important role is being mum to the amazing Florence, who was born in 2023 and received her Kleefstra Syndrome diagnosis at four weeks old. My husband and I learnt Makaton for Flo, we enjoyed it so much we decided to do it all so we were fully prepared. She has started to sign the past two weeks which has just been amazing!

I attended the Midlands meet up at Twycross Zoo and spoke to Wendy about the upcoming Family conference, and my role at work, as a SEND EHCP Officer. She invited me to do a talk at the conference, which led to me volunteering as a Trustee.

Speaking at the conference will be nerve wracking but I am looking forward to combining my professional and personal experience to support other KS families as they navigate the SEND and EHCP pathway.

Hannah - Trustee

Hannah Banfield (Trustee)

I became aware of Kleefstra Syndrome UK through my friend Barbara who I’ve known for over 15 years. When she told me more about her involvement with the charity, I couldn’t help but feel inspired and motivated to find out more.

I was invited to a meeting which I had planned to just sit and listen to, but it was focused on the upcoming Family Conference, and I couldn’t help but chip in and offer some thoughts and suggestions! Luckily, they were happily received by the other Trustees!

I‘ve enjoyed a ‘text-book’ Marketing career and have been fortunate enough to get involved in everything from large-scale TV and radio advertising to digital marketing programmes, conferences and exhibitions. I’ve also spent some time volunteering in my local British Heart Foundation shop where they quickly realised my passion for talking and let me loose on the ‘shop floor’ and till so I could talk all day! I hope to be able to contribute some of that experience to good use with the charity.

I have a teenage son and daughter, a hyperactive Miniature Dachshund and six rescue ex-Battery chickens and I enjoy cultivating my sizable vegetable patch and family holidays away in our caravan.


Page updated: 17-05-2024