Professor Downing is an experienced palliative care nurse, educationalist and researcher. She is the Chief Executive of the International Children’s Palliative Care Network (ICPCN) and a Professor in Palliative Care at Makerere University, Uganda. She has extensive experience in Global palliative care, research and education, and is on the editorial board of ecancer, APM and the IJPN. She has been working within palliative care for over 30 years, with more than twenty of those working internationally in Uganda, Africa, Eastern Europe and globally developing palliative care for both adults and children.

Professor Downing serves on the Boards of several NGOs including the Worldwide Hospice and Palliative Care Alliance (WHPCA), the International Society of Nurses in Cancer Care (ISNCC), ehospice, and the African Palliative Care Association UK (APCA UK), and is an Advisor to the International Association of Hospice and Palliative Care. She is a Visiting Professor at Edge Hill University and the University of Belgrade. She is also a Senior Honorary Research Fellow with the Cicely Saunders Institute at KCL, and an Honorary Senior Fellow at the University of Edinburgh. She was awarded an Honorary Fellowship at Cardiff University and was the recipient of the IJPN’s Development Award in 2006, the ISNCC Robert Tiffany lectureship in 2014, the Pearl Moore “Making a Difference” International Award for Contributions to Cancer Care from the ONS in 2015 and was recognised as one of eight ‘Change Agents in Cancer Care’ in a publication on Women as Change Agents in Oncology in 2016.

When not working in palliative care, Julia is a musician and is involved in running a music school in Kampala, and various local choirs and orchestras. She is also the Director of Music at her local church.

Email: julia.downing@icpcn.org

Alex Daniels is an experienced children’s palliative care nurse and educationalist. She has a Masters in Paediatric Palliative Care from the University of Cape Town. She has been working in paediatric palliative care since 2007, initially facilitating bereavement training workshops, and then as a clinician and trainer in paediatric palliative care. Alex has been working with ICPCN as their Education Officer since 2017, running their e-learning programme and teaching on face-to-face courses, webinars and workshops on paediatric palliative care. She has experience in developing new courses and is involved in education internationally.

Email: education@icpcn.org

Barbara Steel has been working for ICPCN since 2011 and has more than 35 years of experience working in administration and finance. In this position, Barbara works closely with the Chief Executive, Board Chair and Treasurer of the ICPCN to ensure that donations and grants from our funders are spent as they were intended – to improve the quality of children’s palliative care globally. She also provides virtual admin support to the ICPCN team and the members of the board, as well as being responsible for the HR function. She started working for ICPCN while living in Durban, but has been based in Hampshire, England, for the past four years.

Email: admin@icpcn.org

Howard Kinyua is a communications specialist with versatile experience, knowledge, and skillset in development and corporate communications. In addition, Howard has wide experience in media relations, film production, and digital platforms. He has worked for reputable multinational and national organisations.  He has supported the development and implementation of internal and external communications strategies in order to generate a consistent, compelling suite of communication products so as to engage diverse audiences.

Before assuming his current role, Howard worked with international and local NGOs and government departments in designing and implementing Public Relations and Communication Strategies. He also worked with media and production houses as a journalist and film producer.

Email: communications@icpcn.org

Lizzie has worked for children’s health charities for the majority of her career and in the children’s palliative care sector for 21 years. Until January 2023 Lizzie was Director of Programmes and Professional Engagement at Together for Short Lives, the national organisation in the UK for children’s palliative care.  Prior to this she was Chief Executive at ACT, which merged with Children’s Hospices UK in 2011 to form Together for Short Lives.  She has authored many resources, including the Guide to Children’s Palliative Care and a range of Care Pathways.   Lizzie led many programmes for the charity, including an ‘Improving Transition for Young People’ Programme and a project that piloted family support volunteering.

Lizzie has been involved in the global development of children’s palliative care as founding co-chair of the International Children’s Palliative Care Network. She was also chair of the Paediatric Taskforce of the European Association of Palliative Care.

Lizzie is delighted to be joining the ICPCN team in her role as Consultant Programmes Manager, in which she will be developing and updating some of the ICPCN resources and e-learning modules.

Email: programme.manager@icpcn.org

Cassie Thompson works independently as a fundraising freelancer. After 15 years working in the not for profit sector for the Institute of Directors, British Heart Foundation, Maggie’s and The ARCHIE Foundation in corporate, major donor and senior management roles she harnesses her expertise to help other charities, such as ICPCN, develop and support their fundraising profile enabling them to cultivate positive relationships and create more revenue.

Over the years she has successfully led and delivered major capital appeals, campaigns, projects and events such as Wild Dolphins (2014) and Oor Wullie’s Bucket Trail (2016).

She is  hugely passionate to make a difference and committed to working with likeminded people to help ‘nurture’ their talent and relationships so that they – and your charity finances ‘flourish’ now and in the future. 

She is delighted to be supporting the work of ICPCN

Email: fundraiser@icpcn.org

Mike has worked in the hospice sector for 12 years, first at Hospice UK, then Haven House Children’s Hospice in North East London for 10 years before moving to Jersey Hospice Care as CEO in 2021. During that time he has developed a passion for providing dignity and choice to those at the end of their lives, whether children or adults. Mike started working life in the banking industry before joining the voluntary sector in 1993. He started at the RNIB as a fundraiser, heading up a Capital Appeal. Then following five years at the Princess Royal Trust for Carers (now Carers Trust) as Director of Fundraising, he became Chief Executive of Age Concern Havering, a borough with one of the highest elderly populations in London. Mike became interested in the hospice world as a result of family experiences, working for a year as Interim Director of Fundraising at Hospice UK before being appointed as Chief Executive of Haven House in 2011, where he also served as Board member and Chair of CHaL (Children’s Hospices Across London). In 2019 he became Treasurer of the ICPCN and then stepped up to become Chair in Spring 2022.

Mike is excited about his appointment as the Chair, stating “With less than 5% of the 21 million children and young people worldwide who need it having access to good palliative care, the unmet need is massive. ICPCN has made significant contribution to the growth of children’s palliative care over the last 20 years but a huge amount remains to be done. I’m looking forward to working with Professor Julia Downing, our Chief Executive, to make a big and lasting difference in the future.”

Rob currently holds the position of CEO of Les Bougs Hospice in Guernsey, where he has been working since October 2023. Previously he was the Chief Financial Officer within the Welsh government. His career background is in finance, taxation and governance and he has also served in different capacities in the not-for-profit sector. Prior to working for the Welsh Government he  held the position of CEO of a well-known children’s hospice in the UK.

Prof Baker started working as a Professor and Chief, Division of Quality of Life and Paediatric Palliative Care at Stanford University, California, in November 2023. Previously he was the Chief of the Division of Quality of Life and Palliative Care at St. Jude. He was a founding team member of the Quality of Life for All (QOLA) Service – the St. Jude palliative care team. Additionally, he founded and continues to lead the St Jude Bereaved Parent Steering Council and Bereaved Parent Mentoring Program.

His research interests include communication and decision-making in advancing cancer, ethical considerations surrounding enrolment in Phase I clinical trials, AYA palliative oncology care, grief and bereavement issues, integrating palliative care into the ongoing care of children with cancer as well as patient-reported outcomes and pain and symptom control in the context of paediatric oncology care. Prof Baker is an internationally recognized physician-scientist (>230 publications) with extensive research and clinical experience in communication skills training at the intersection of paediatric oncology and palliative care. He has overseen the implementation of >100 clinical research studies at SJCRH.

In summary, Prof Baker is a recognized international expert and leader in the field of Paediatric Palliative Oncology as well as a highly sought after speaker and mentor with a track record of success.

Prof Baker has been married to his college sweetheart (beautiful Monny from Monterrey, Mexico) for more than two decades and he and his wife are proud parents of four incredible children.

Dr Brits has already served a six-year term as an ICPCN Trustee and, after a couple of years break, she has once again agreed to volunteer her time and experience in children’s palliative care to serve as a member of the board. She is a Family Physician working for the Department of Health and the University of the Free State in Bloemfontein, South Africa. She is committed to ensuring a balanced lifestyle, including family, friends and work. Her special interests are maternal and childcare, paediatric palliative care, teaching and training, and research. With over 30 years of work experience, she sees her role as empowering others to be the best versions of themselves by supporting and assisting their development.

Her motto is that “she has achieved her goal if she has helped others become better than herself”. She serves in numerous leadership positions locally and nationally; her research is published widely in national and international journals and she is also an accomplished trainer.

Hanneke expresses her creativity through cooking and baking, while her love for the outdoors is satisfied with camping and motorcycling. Comment from Dr Brits :  “ICPCN may not be the cure, however it is supporting care for children and families affected by life-limiting conditions.”

Dr Stephen R. Connor is the Executive Director of the London, UK based Worldwide Hospice Palliative Care Alliance (WHPCA), an alliance of over 400 national and regional hospice and palliative care organizations in over 100 countries. Dr Connor has worked continuously in the hospice/palliative care movement since 1975 including 10 years as vice-president of the National Hospice and Palliative Care Organization (US), he is now focused on palliative care development internationally with the WHPCA and has worked on palliative care globally in over 25 countries.

In addition to being a hospice and association executive, he is a health services researcher, educator, advocate, and psychotherapist, licensed as a clinical psychologist. Dr Connor is on numerous international boards (Including ICPCN), has published over 150 peer reviewed journal articles, reviews, & book chapters and is the author of six books on palliative care.

A native of Guadalajara, Mexico, Dr Okhuysen-Cawley is an Associate Professor of Paediatrics at Baylor College of Medicine and Texas Children’s Hospital, Divisions of Palliative Medicine and Paediatric Critical Care Medicine. Her areas of interest are the bedside care of seriously-ill children, their parents, and their interdisciplinary teams, and global health.

Dr Palat played a key role in establishing the Department of Palliative Medicine in MNJ Institute of Oncology and as an advisor to Government of Telangana, setting up of district based palliative care program in the state of Telangana. She is also one of the founder members to establish a non-governmental organisation called ‘Pain Relief and Palliative Care Society (PRPCS)’ in Hyderabad, which is one of the largest NGO’s in the region to provide palliative care in the community through home-based care called ‘life at your doorstep’. It also offers a hospice and rural out-reach program and a very unique paediatric home-based and hospice program for children with life limiting conditions in the region.

Working as the Director of PAX Asia, Two World Cancer Collaboration- Canada and as Don Rix Personal Professor of Palliative Medicine, Dr Palat is also actively involved with the foundation in capacity building of palliative care in countries like India, Nepal, Philippines and Bangladesh.

Dr Tan Ru Wei lives in Selangor, Malaysia and works at the Columbia Asia Hospital (Klang) as the resident Consultant Paediatrician and Head of Department of Paediatrics.  He is also currently Chair of the Hospital Infection and Antibiotics Control Committee where he is in a position to provide input without prejudice, especially in regards to the hospital’s Antibiotic Stewardship Program.

In 2018, he was part of a special taskforce set up by the Malaysian Ministry of Health to promote and develop Paediatrics Palliative Care (PPC) in the country, and in 2021 the first Malaysian PPC handbook was published to help clinicians manage children with PPC needs. He is passionate and committed to advocating for PPC. Trained not just in Paediatrics but also in paediatrics bioethics and medical leadership, Dr Tan has a unique blend of skills and knowledge that is valuable in the mission of ICPCN for global mission to advocate and develop children’s palliative care.

Zodwa has worked in the health sector in various disciplines including general nursing, midwifery, community health and palliative care. She gained valuable experience in various private, government and community institutions and has worked in environments with limited resources, illiteracy, abject poverty and general deprivation, hence covering a diverse content of first and third world care. She is formally trained in general nursing, midwifery; primary health care, nursing administration and education; community health care and palliative care. She holds a B. Cur degree and a Master’s degree in Nursing.

Zodwa has participated in numerous national and international conferences. She has managed to advocate for the integration of palliative care in the caring of inmates living with life threatening illnesses in the South African prisons; advocated for palliative care with Traditional Healers resulting in the development of a ‘Palliative Care curriculum for Traditional Healers’. She co-ordinated the development of the Alliance for Access to Palliative Care – a group of individuals who are not working in palliative care but assist in advocating for palliative care. Zodwa is currently working for the Cancer Association of South Africa (CANSA) as the Head of Advocacy

Michael is the clinical director at Bluebell Wood Children’s Hospice  an associate professor of maternal and family health at Northumbria University, UK. He is a children’s nurse, health visitor, independent prescriber and advanced nurse practitioner.  He has a master’s degree in public health and a PhD in palliative care, gained at the International Observatory on End of Life Care. Michael has more than 20 years of palliative care experience, providing care and leading services babies, children and young people with life limiting and life-threatening conditions, and their families. He has worked as a director of nursing, consultant nurse, community specialist practitioner and Commissioner in the hospital, hospice and community setting. Recently, Michael has led the development of a regional community-based palliative care service, allowing children to access symptom management and end of life care at home, and supporting families after the death of their child.

Alongside his current roles, Michael works for the Care Quality Commission (CQC), the independent regulator of health and social care in England, with a particular focus on services for babies and children with complex and palliative care needs. He has published widely on various topics relating to family centred children’s palliative care and is on the editorial boards of two medical journals.

Dr. Christina Vadeboncoeur is an Associate Professor of Pediatrics in the Department of Medicine at the University of Ottawa and is the Medical Director of the Palliative Care Program at CHEO and Roger Neilson house.  She is the Vice-Chair of the Canadian Network of Palliative Care for Children and is the Canadian Trustee for the International Children’s Palliative Care Network.  She collaborates on multicenter clinical research in Canada and population data research in Ontario.  She is an Associate Fellow of interRAI, an international not for profit organization involved in developing assessment tools for vulnerable populations.

Dr Wekesa is very passionate about palliative care and is actively involved in making services and education available in Kenya. She has volunteered for Coast, Kakamega, and Nairobi Hospices in Kenya. She holds a Master of Science and Diploma for Higher Education in Palliative Care from Oxford Brookes University. She also holds a Certificate in Teaching and Learning for Higher Education from the same University and a Bachelor of Medicine and Bachelor of Surgery degree from the University of Nairobi.

Her roles include clinical care of patients and families, teaching in various palliative care programmes for health care providers, and advocating for the availability of opioid analgesics. She is passionate about making palliative care services available to vulnerable groups including children. Her motivation in serving as a trustee on the ICPCN board is to be part of the team advocating for the availability of skilled palliative care services for children and the much-needed education for health care providers around the world.

Micheline Etkin is a glamorous supermodel, as well as a wife and mother to three adult children. Born in Lebanon, raised in Sao Paulo, Brazil and now living in Arizona in the USA, Micheline is a truly global personality with a unique cultural perspective. She passionately supports organizations which help the world’s most vulnerable children. She is a founding council member of Stars Of The Season benefiting Cardon Children’s Medical Center, co-founder of Casa Brazil (www.CasaBrazil.org), and a honorary member of PANDA (www.AZPanda.org), all charities benefiting children.

The ICPCN is delighted to have Micheline as a global ambassador. We’re thankful she will raise awareness surrounding the needs of children with incurable and life-threatening illnesses, so they may experience a better quality of life through palliative care.

You can find out more about Micheline on her website at www.michelineetkin.com

Dianne Gray is CEO of Hospice and Healthcare Communications hhccommunications.com and CIO of Acclivity Health Solutions acclivityhealth.com. She’s also an author, film consultant, producer, on-camera TV host, frequent segment guest and is an innovation expert for tech, communication and healthcare companies.

Dianne is a board member and former president of the Elisabeth Kubler-Ross Foundation www.ekrfoundation.org, past ICPCN board member and co-founded the American Academy of Paediatrics’ SOHPM’s Parent Advisory Group.

She has contributed to over 100 projects, publications, films, textbook chapters, research and has also quietly guided hundreds of people around the world through end of life.  She’s also worked with thousands who are hoping to find peace while coping with deep grief.

Dianne’s global keynotes focus on advocating for the needs of seriously ill people and their family members who are hoping to live as fully as possible while facing end of life and profound loss.   Her unwavering commitment to improving care for seriously ill children worldwide is born from her 14-year experience as caregiver and mom for son, Austin, who died in 2005.   Being in observance of Austin’s profound suffering helped to shape Dianne’s belief that this journey is about loving unconditionally and living as fully as possible until that singular moment when life ends. She is incredibly grateful for the life of her daughter and all her patients and their family members have taught her.

On a personal note, she’s a world championship angler, adventured in the open ocean with humpback whales and has travelled to 19 countries and over 400 cities thus far. She graduated from Western Carolina University with a degree in Sports Management and has a passion for neurology.  She has done extensive graduate work in grief studies and palliative care and co-created university-level advanced degree coursework in paediatric palliative care.

Joan Marston was ICPCN’s first and immediate past Chief Executive and one of the founding members of the original ICPCN Steering Committee in 2005, Joan has had an inspirational and influential role to play in the growth and development of this organisation.

A global citizen, Joan is however based in South Africa and comes from a background in Nursing and Social Science. She has 22 years’ experience in palliative care for children – caring for children as the Executive Director of Bloemfontein Hospice and then founding the Sunflower Children’s Hospice in 1998 in Bloemfontein, South Africa, as well a regional network for life-limited children, the St Nicholas Bana Pele Network, in 2009. As the national paediatric development manager for the Hospice Palliative Care Association of South Africa, from 2007 – 2010 Joan and her team developed a strategy for a national network of services, promoting the considerable growth of the number of children’s palliative care services for children in South Africa. During that time she was the Project Manager for a programme to develop children’s palliative care Beacon centres in Tanzania, Uganda and South Africa.

Married to Richard with two adult children living in the Channel Islands, she has three grandchildren. She is an active member of the Anglican Church, and is a Lay Minister in the Cathedral in Bloemfontein; and an Honorary Lay Canon of Blackburn Cathedral in Lancashire, England.

A committed advocate for children’s right to palliative care and pain relief, Joan believes that this can be achieved worldwide when people share knowledge and resources, and work together to expand access to palliative care for all children.

We were all at ICPCN immensely saddened to hear of Lucy’s death on the 26^th April 2023 at Southend Hospital. Lucy was a passionate champion of hospice and palliative care across all ages, especially for children and young adults, advocating for global access to palliative care and disability rights for all, regardless of where in the world they live. Her indomitable spirit shone through in all that she did and achieved and she outlived her initial prognosis by many years – using her energy and passion to advocate for palliative care and disability rights. We are determined that her legacy will live on and so are keeping her as a Global Ambassador for ICPCN.

Lucy lived at home with her mother Kate, and for many years her Assistance Dog, Molly, who she trained to provide support to her with help from the charity Dog Assistance in Disability. Following a normal and energetic childhood, Lucy had a life-limiting condition, an undiagnosed, progressive neuromuscular disease that meant she had very complex health needs and required round the clock care.

She had multiple organ failure and was dependent on Total Parenteral Nutrition (TPN), thus being fed directly into her bloodstream , as well as intravenous medications and fluids around the clock.  Alongside this she had a gastrostomy tube to drain her stomach as well as an Ileostomy and a Urostomy. She received palliative care since the age of 17 and was supported by several different hospices including the J’s Hospice (a local young adult hospice-at-home service) along with Southend Hospice.

She recognised the importance and value of access to palliative care and the difference that it made to her life, yet was aware that many people around the world had no access to palliative care services, and were suffering needlessly. Thus, she used any opportunity that she could to advocate for access to palliative care at the national, regional and international level.

Her work involved writing, speaking, media work, sitting on national and regional boards, co-leading research, consultancy and advisory roles, working with charities in various roles, such as Together for Short Lives, the International Children’s Palliative Care Network (ICPCN) and the Worldwide Hospice Palliative Care Alliance (WHPCA). She also set up an international palliative care patient and carer network in 2017 called Palliative Care Voices, and worked with individuals to raise awareness of issues of sexuality within young people with palliative care needs.

Despite her poor health, Lucy was an advocate to the end, contributing to books, papers, TED talks, blogs, social media and generally doing what she could to raise awareness of palliative care. She was also key to promoting palliative care with the World Health Organization, and would regularly meet and speak with the Director General Dr Tedros. In 2016 she received an MBE for services to young people with disabilities; a huge achievement for someone who was just 22 at the time.

Alongside Lucy, her mother Kate and beloved assistance dog Molly were there to support her and enable her to do all that she did – her work and legacy would not have been possible without them, her sister and others who supported and cared for her day in day out. She commented that “despite my illness, I live a great life – a life I love.” She loved her work and on her blog (http://www.lucy-watts.co.uk) she once wrote: “My biggest fear in life is that I won’t have made a difference, that my life won’t mean anything. I hope I am making a difference with what I am doing”. She was always keen to remind people that “palliative care is not just about dying, It’s about living as well.”

Lucy’s enduring legacy will be that she campaigned tirelessly, despite many personal challenges, to increase access to the palliative care that she received, and which she fervently believed should be available to everyone, no matter where they lived. The world will be the poorer without her energy and determination as a formidable campaigner and we will miss her greatly. We will do our best to ensure Lucy’s work and legacy continues.

Charlie, is the Managing Director and Co-founder of Wild in Art He is a former sports executive and army officer, was at the forefront of taking exhibitions of cow sculptures to cities across Europe as Managing Director of CowParade. Before setting up Wild in Art with Sally-Ann Wilkinson he also developed a match-funding programme to encourage sponsorship of grass root level sport, and worked with the International Tennis Federation, Oxford and Cambridge University Boat Race, Royal Ascot and the World Athletics Championships. You might not be surprised to learn that he represented Great Britain in the winter sport of Skeleton.

He’s a big believer in collaborative working to make the shared vision for an event a reality. And when he’s not working in partnership with charities or cities, he’s overseeing the development of a new line of Wild in Art merchandise.

Charlie is a UK based member of the British New Zealand Business Association (BNZBA) and a Fellow of the Royal Society of Arts.

Charlie is committed to supporting the development of children’s palliative care globally and is a great supporter of ICPCN, enabling us to develop our new brand and website amongst other things.