Honorary President
Philippa Brownjohn
Philippa Brownjohn is the founder and recently appointed honorary president of the Jessie May Trust.
Following the loss of her beautiful daughter Jessie over 30 years ago to Severe Spinal Muscular Atrophy, Philippa saw a huge need for care and support in the home for families caring for life limited children. After years of research and planning, talking to and enlisting an amazing team of people, she lay the foundations for the charity in memory of her daughter. The Jessie May Trust finally opened its doors in 1996.
Over several years Philippa was actively involved in the day to day running of the trust, ensuring the right team was established to take the charity forward in the future. Eventually stepping down from the position of Trustee to concentrate on bringing up her young family in Buckinghamshire. Philippa is wife to Paul Brownjohn and mother of two boys James and Harry, as well as Jessica. She still resides in Marlow where she has been living for the past 30 years.
Philippa has continued to maintain a huge interest in the evolving charity for which her love and passion has always remained.
"To be welcomed back to Jessie May means such a lot to me, I feel overwhelmingly honoured to have been asked and will do my utmost to help in any way that I can with the essential work, care and support for all the families of Jessie May"
Jo Chambers
Following Jessie May’s death in 1994, Philippa and Chris Purrington, her parents, wanted to set up a service in Bristol similar to the one that had supported them in High Wycombe and which had enabled them to care for Jessie May at home and for her to die at home in their arms. My husband, Tim Chambers, introduced me to them because I had experience of home palliative care for children with cancer; he had cared for Jessie May in Southmead hospital during a visit to her grand parents in Bristol. At the time I was a consultant in adult Palliative Medicine working at Southmead Hospital.
Together with several significant others our discussions led to the creation of the Jessie May Trust in 1996, and I joined Chris and Philippa as one of the founding board members. I remained on the board, (with a break from 2006 till 2010) till 2017. My areas of support were with clinical governance and the setting up of the bereavement team till I retired.
I was appointed a Deputy Lieutenant of the City and County of Bristol in 2004. I continue to support Jessie May; attending functions as requested, endeavouring to maintain it’s profile locally with fundraising initiatives and donations around where I live and my local church.
Ambassadors & Patrons
Barry Hearn
Patron
Barry Hearn qualified as a Chartered Accountant in 1970 and spent several years with a major firm of international accountants before moving into the commercial world as finance director of Kensal House Investments. He became chairman of Lucania Snooker Clubs in 1974 and began to involve the snooker hall chain in amateur tournament promotions.
In 1976 Steve Davis began playing at the Romford Lucania Club and the two struck up a friendship which was to have a major influence on the world of snooker. In 1982 Riley Leisure acquired the chain of Lucania Snooker Clubs for £3.1 million leaving Barry free to concentrate on the development of snooker, both in the UK and overseas. With the support of the Matchroom professional players, Barry promoted snooker all over the world and has been particularly instrumental in the development of the game in the Far East.
Barry began his involvement in big time boxing by going straight in at the deep end – staging the Joe Bugner v Frank Bruno heavyweight show-down at Tottenham’s White Hart Lane Stadium in 1987, in front of 30,000 people. Together with Sky Sports, Barry helped discover and develop such champions as Chris Eubank, Nigel Benn, Herbie Hide, Francis Ampofo, Steve Collins, and Jim McDonnell. In more recent times, in conjunction with his son Eddie, the Hearns have set the likes of Carl Froch and Olympian Anthony Joshua on the path to glittering success.
Married to Susan with two children, Barry lists his sporting interests as fishing, running and golf. Whilst he has no pretensions about his snooker skills or come to that, his boxing ability – Barry is a fanatical angler and spends many a relaxing hour outwitting the carp in his private lake.
As long-standing Chairman of the Professional Darts Corporation, Barry has overseen one of the sports business’s biggest success stories as darts has developed into a massive arena sport. In March 1995, Barry Hearn assumed a controlling interest in Leyton Orient Football Club and over a twenty year period stabilised the club on a sound financial footing.
Finally, returning to his roots, in December 2009, Barry was voted in as Chairman of World Snooker and has since assumed a leading role as the revitalisation of the sport has gone from strength to strength and turned snooker into a real global sport.
Over the years, Barry Hearn’s Matchroom Sport organisation has grown into one of the world’s most prolific independent sports promotion and television companies, producing over 1,000 hours of original material each year.
Julie Kembrey
Ambassador
I am Julie Kembrey, the bereaved mum of twin daughters, Francesca and Josephine, who were diagnosed with a progressive and life-limiting condition aged 31/2 years.
Our family first learned about Jessie May when our daughters were referred to the service in 1998. At that time Jessie May was a fairly new local charity and not very well known. We were so fortunate to be cared for by the wonderful nurses and to become part of the Jessie May community.
In the early days, Francesca and Josephine enjoyed play, stories and singing during the visits and, as a family, our confidence quickly grew. We also looked forward to Family days and Christmas parties where we could meet and socialise with other families.
As time passed, our girls’ health and abilities deteriorated. They needed an ever increasing amount of medication, equipment and nursing which was challenging, tiring and stressful for our family. Jessie May were such an important part of our growing team and we always felt supported by the friendly and highly skilled nurses who worked in our home. They gave us some important downtime, but also a listening ear and helpful advice when the girls were unwell or when their symptoms changed.
Sadly, Francesca died aged 15 1/2years and Josephine aged 18 years. This was a devastating experience for our family and once again we were supported by Jessie May’s compassionate nurses and ongoing bereavement support. I don’t know how we would have coped without them.
Gradually, I regained strength and wanted to use the skills I had learned to help Jessie May and the families they support. Volunteering alongside the nurses, I founded a bereavement group for parents, the Purple Group. I was also a trustee for 8 years and have been part of many fundraising and promotional events. As a Jessie May ambassador with a particular interest in bereavement services, I bring my personal experience and wider knowledge to the team.
Over the years Jessie May has grown and matured into the well known and much respected Children’s Palliative Care service it is today.
Roger Harper
Ambassador
For several years Roger has worked closely with a local disabled sports team. Understanding their needs and building many friendships with the team members has stood me in very good stead for his involvement with Jessie May. Engaging with people with disabilities not with disabled people. Understanding the enormous difference between those two descriptions.
“Everyday proudly wear my purple Jessie May wristband and Jessie May lapel badge. It is amazing how many people ask me about those two items and their enquiry is my opportunity to “spread the word” about how great the Jessie May charity is.”
Roger recently ran the Bath Half Marathon to raise funds for Jessie May. He tries as hard as he can to take part in as many of the Jessie May events as possible. The events are always inspiring. Everyone involved or associated with the charity are extraordinary people achieving extraordinary things. The wonderful unsolicited testimonials received by the charity make all the hard and committed work so worthwhile.
Roger have always lived in the Bristol area, married with two adult children, who are both married and one beautiful grandchild, aged 7. He was previously a solicitor and then a barrister. As a legal practitioner he advised mainly on child law and also employment law, and he continues working in the legal field in Bristol. He has held a number of work place managerial roles and has been President or Chairman of a large number of local organisations.
“I joined Jessie May at a very exciting time, and I very much hope that I will continue to have a long and happy association with it.”
Julianne Ponan
Ambassador
Julianne is a multi-award-winning young entrepreneur who’s created snack bars and baking mixes to cater for all different allergies, vegans and those wanting a healthy, yet tasty alternative to what’s in the market. Her products are sold in Asda, Co-op, Sainsbury’s, Ocado and many more (over 5,000 stores across the UK!), as well as overseas in countries like Dubai, Oman, Kuwait, Malta and soon the USA! It almost didn’t happen for her though…
…At 9 years old, Julianne was given just 4 hours to live after a routine laparoscopy for pancreatitis ran into complications. With the help of some amazing young doctors, Julianne pulled through and was walking, running and dancing within 3 weeks (although she had to stay in the hospital for over 6 months). Her pancreatitis came back at 17 and doctors told Julianne she wouldn’t live past 24. Now aged 29, Julianne is living proof that no matter how difficult the situation seems, belief is more powerful.
“I’m so happy to be supporting Jessie May as it’s a charity so close to my heart. I wish they could have been there when I was younger and had pancreatitis, an illness never recorded in children as young as me. It was a scary time for me and my parents, so having Jessie May nurses would have helped us out immensely. I look forward to getting to know the children and supporting in any way I can.”
Lloyd Kembrey
Ambassador
Lloyd Kembrey has supported Jessie May since he was a child.
"Jessie May is a charity that holds a special place in the heart of my whole family. They supported my cousins, Francesca and Josephine, during their lives and the support given to them, my Auntie and Uncle and the rest of the family was just immeasurable. From that time, I have been in awe of the work and support the charity and their team provides to both the children they care for and their families.
We as a family have been involved in many fundraising efforts, including attending various business open days, bag packing in the supermarket and fundraising outside the Bristol Hippodrome at a young age with our cousins. Because of this, when the Trust asked me to be an ambassador I was honoured and am very proud to support the charity now in an official manner. 2023 is an exceptionally exciting year and we have a lot of weird and wonderful challenges lined up to support the incredible work we do!"
Zara Nanu
Ambassador
Dr. Zara Nanu MBE is an advocate for workplace gender equality and wider fair pay.
As the CEO of Gapsquare from XpertHR, which offers expansive diversity and equality data
intelligence & report generation, Zara is utilising data science and AI to reimagine the future
of work.
Zara is an unstoppable campaigner around building technology-led workplaces with
inclusivity at their core. Using her expertise, Zara can be seen speaking at international
events, sharing her ideas with the OECD and through her recent TED talk, as well as within
a range of reports and publications. Zara believes in putting the power and responsibility of
equality and diversity in the hands of employers.
As a graduate of The University of the West of England (PhD in Social Sciences), Zara can’t
wait to get started and help a local charity reach hundreds of families across the south west.
Sir Steve Webb
Ambassador
Steve Webb was a Member of Parliament in South Gloucestershire from 1997 to 2015 and has been a keen supporter of the Jessie May Trust for many years. He was the Pensions Minister in the government between 2010 and 2015.
Before being elected to Parliament, Steve was Professor of Social Policy at Bath University, and since stopping being an MP he has been working the pensions industry. He regularly comments on TV, radio and in the press on pensions issues.
He was awarded a knighthood in the New Year’s honours in 2017.
Steve lives with his family near Thornbury and in his spare time he volunteers as a debt adviser with Thornbury-based New Start Debt Advice.
Laura Tomlinson
Ambassador
Laura Tomlinson is an international dressage rider who has competed at a number of high profile shows including two Olympic games. She was a part of the gold medal winning team at the London 2012 Olympics and also took home an individual bronze medal with her horse Alf.
Laura and her husband Mark, who plays polo, live in Gloucestershire where they raise their four young children.
“I am so delighted to be an ambassador for Jessie May and to support the incredibly important work they do. The support they provide to children and their families through such difficult times is invaluable. I hope that with this partnership, I can help widen Jessie May's audience so that more people can see and support their wonderful work.”
Rob Walker
Ambassador
Rob Walker has been a network TV broadcaster since 1999 appearing regularly on BBC Sport, ITV Sport and Channel 4, the 3 main terrestrial channels in the UK.
His two biggest broadcasting passions are Athletics and Snooker. Rob has covered every edition of the World Athletics Championships since Helsinki 2005 as one of the lead TV commentators for World Athletics and every edition of the World Snooker Championships since 2008.
His voice is familiar with fans of both sports all over the world as a result.
Rob has also covered every Commonwealth Games since 2002, every Summer Olympic Games since Athens 2004 and every Winter Olympic Games since 2010.
Rob is renowned throughout the Broadcasting industry for his diligent prep, as well as his distinctive voice and genuine enthusiasm on air. He is also now a published Author, having written the most comprehensive Children's books ever put together for the Olympic Games.
Over the course of 7 months from October 2021 to May 2022, 3 of Rob's great friends passed away through various illnesses. After delivering eulogies for all of them, in June 2023 Rob decided to Run and Cycle from John O Groats to Lands End in their memory, raising money for 2 charities including Jessie May.
He chose Jessie May because one of his 3 friends, Robin, was closely associated with Snooker and another Martyn lived all his life in Bristol.
The connection with Jessie May on both levels seemed poignant and obvious.
Very sadly that link to Jessie May was further strengthened in December 2022 when one of Rob's son's closest friends suddenly died age 9 on holiday in Lapland visiting Father Christmas.
George had a light that shone so bright and the entire East Gloucestershire rural community where he lived was devastated.
After seeing Jessie May's bereavement counselling close up, Rob was honoured to be asked to sign up as an Ambassador for the Charity earlier this year.
He is already planning another fund raising epic...watch this space!