Board of Directors

Ken Ross – Founder and President

EKR President, Ken Ross

Ken Ross, son of Dr. Elisabeth Kübler-Ross, is the founder of the EKR Foundation (2006) and President (2006-2013 & 2018-Present). He also served on the board of the Elisabeth Kübler-Ross Center from 1989-2005. Ken was the principal care provider for his mother in the last 9 years of her life until her passing in 2004.

As president of the Elisabeth Kübler-Ross Foundation, Ross manages relationships with over 80 publishers of Dr. Kübler-Ross’s work in 44 languages, oversees public relations, addresses copyright and trademark issues, develops international EKR chapters, forges strategic partnerships, and curates her archives. During his upbringing, he extensively traveled with her on numerous foreign trips, witnessing her lectures and workshops firsthand.

For the 50th anniversary of “On Death & Dying,” he appeared in various interviews, including Radiolab, Irish National Radio, the BBC’s “Witness History” and the Australian Broadcasting Corp. (ABC) television, speaking about his mother’s legacy. From 2022 to 2023, he delivered live in-person presentations in Ecuador, Guatemala, India, Mexico, Nepal, Singapore, and Uganda for the Elisabeth Kübler-Ross Foundation. He was also named an honorary faculty member of the University of Indonesia (Jakarta) School of Economics in 2023.

Ken is proud to serve on the board of directors for Open to Hope, as well as being on the advisory council of the Humane Prison Hospice Project.

See Ken Ross on on YouTube.com

A professional photographer by trade, he has photographed 112 countries.

http://archive.azcentral.com/news/articles/2008/06/19/20080619sr-kenross0621-ON.html

www.kenrossphotography.com

Author, “Real Taste of Life: A Journal” by Ken Ross and Elisabeth Kübler-Ross, 2002

Tea with Elisabeth by: Ken Ross, Fern Stewart Welch, and Rose Winters, 2009

Honorary faculty member – University of Indonesia, School of Economics

Joan Marston – Board Member/Vice President

Joan Marston is based in South Africa and is presently an International Children’s Palliative Care Consultant with PaCCHI – Palliative Care for Children a Humanitarian Imperative; also ICPCN Global Ambassador for Children’s Palliative Care and Director of Education and Development for Sunflower Children’s Hospice in South Africa.

Joan’s background is in Nursing and Social Science and she has 22 years experience in palliative care for children – caring for children when 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 pediatric 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 program to develop children’s palliative care Beacon centers in Tanzania, Uganda and South Africa.

In 2005 colleagues from 15 countries established the International Children’s Palliative Care Network, with Joan as the first Chairperson from 2005 – 2010, then become the first CEO from 2010- October 2016. The ICPCN now has membership in over 100 countries.

Joan was part of the group that developed the new Guidelines for Persisting Pain in Children, as well as Guidelines for Disclosure in Children, for WHO.

Married to Richard with two adult children living in the UK, and an active member of the Anglican Church, Joan 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.

Barbara Rothweiler, Ph.D, ABPP – Board Member/Board Secretary

Dr. Rothweiler, daughter of Elisabeth Kübler-Ross MD, is a licensed psychologist, with board certification in neuropsychology and rehabilitation psychology. In addition to conducting neuropsychological evaluations, she provides consultation liaison services, specializing in medical rehabilitation, but also hospital wide, including palliative care and hospice. She serves on the Aspirus Wausau Hospital Bioethics Committee and the Medical Staff Support Committee. She is a member of the American Academy of Clinical Neuropsychology, International Neuropsychological Society, National Academy of Neuropsychology, American Psychological Association, and the Wisconsin Psychological Association. She also serves as board member of Mount Sinai Congregation.

Stephen Connor, PhD – Board Member/Treasurer

In addition to being a hospice and association executive, he is a researcher, educator, advocate, and psychotherapist, licensed as a clinical psychologist in California. Dr. Connor’s areas of research interest in palliative care include bereavement, denial, outcome measurement, and evidence-based care for the dying. He has chaired the board of the International Work Group on Death, Dying, & Bereavement, is on the Scientific Advisory Board for the National Palliative Care Research Center and is a member of the board of the Elisabeth Kübler-Ross Foundation and the International Children’s Palliative Care Network (ICPCN). Dr. Connor is on the editorial board of the Journal of Pain & Symptom Management and has published over 175 peer-reviewed journal articles, reviews, and book chapters on issues related to palliative care for patients and their families. He is the author of Hospice: Practice, Pitfalls, and Promise (1998), Hospice and Palliative Care: The Essential Guide (2009 & 2018), and editor of Building Integrated Palliative Care Programs and Services (2017) and the Global Atlas of Palliative Care (2014 & 2020), a WHPCA publication in partnership with the WHO.

M. R. Rajagopal, MD – Board Member

Dr. M.R. Rajagopal is an anaesthesiologist-turned-palliative care physician from Kerala, India. He is currently chairman of Pallium India and director of Trivandrum Institute of Palliative Sciences (TIPS) which is a WHO Collaborating Centre for Training and Policy on Access to Pain Relief. The organization works at the national level in India and has its headquarters in Trivandrum in the state of Kerala in South India.

While working as Professor and Head of Anaesthesiology at Calicut Medical College, he with his colleagues founded the Pain and Palliative Care Society in 1993 offering free pain management and palliative care to poor patients. In 1995, this was declared a WHO demonstration project and grew to the present Institute of Palliative Medicine and a network of over 300 palliative care centers in the state of Kerala. This initiative resulted in palliative care reaching about 50% of the needy in Kerala compared to the national average of less than 4%.

Seeing that in the next ten years, the development of palliative care was poor in the rest of the country, he founded Pallium India, a non-governmental organization that “envisions an India in which palliative care is integrated into all health care, so that every person has access to effective pain relief and quality palliative care, along with disease-specific treatment across the continuum of care”. The organization has a strategy of ‘Demonstrate, Educate and Facilitate’ demonstrating delivery of quality palliative care to the needy ‘where they are’ with community participation, providing educational programs, and facilitating the development of policies and programs across the country.

His initiative also led to the development of a Government policy on Palliative Care in the state of Kerala in 2008 and to its revision in 2019, and to the National Program for Palliative Care of the Government of India in 2012. His work with the WHO Collaborating Centre at Pain and Policy Studies Group (PPSG) in Madison-Wisconsin and with the Access to Essential Medicines program of WHO contributed significantly to the amendment of India’s draconian Narcotic Drugs and Psychotropic Substances (NDPS) act by the Parliament of India in 2014. The organization works with the Government of India for the integration of palliative care and implementation of the National Health Policy of 2017. The organization also takes the lead in operationalizing the inclusion of palliative care in undergraduate medical and nursing curricula.

Dr. Rajagopal is a lifetime advisor to the International Association for Hospice and Palliative Care (IAHPC). He is on the editorial board of several international journals and has authored/edited two textbooks, several book chapters (including the Oxford Textbook of Palliative Medicine), and more than 30 publications in scientific journals. He is an adjunct professor of global oncology at Queen’s University, Kingston, Canada.

The New York Times wrote an article that described his work in 2007. In 2008, the International Association for Pain and Chemical Dependency honored him in Philadelphia with the Marie Nyswander Award for his contributions to the field of pain management. In 2010, the International Association for the Study of Pain (IASP) honored him with its award for excellence in pain management in developing countries, at the World Pain Congress in Montreal. The international organization “Human Rights Watch” honored him with the Alison Des Forges award. In 2017, a documentary film titled “Hippocratic: 18 Experiments in Gently Shaking the World” was based on his contributions to palliative care. In 2018, he was honored with Padma Shri, the third-highest civilian award given annually by the Republic of India.

He recently published his memoir, ‘Walk with the Weary’.

Mary Spada – Board Member

Ms. Spada brings over two decades of knowledge, thought leadership, and experience to address corporate challenges with collegial creativity, exceptional insight, and razor-sharp intellect. Ms. Spada is a highly valued catalyst for change that visionary leadership relies upon again and again for out-of-the-box thinking to benefit future planning, complex project management, transaction structuring, and business transformation.

Recent engagements include:

• business planning and entity formation for novel tech/transportation start-up
• public/private partnership opportunity assessment and evaluation
• planning, financing, design and construction of HPC facilities
• assessment of digital economy entry strategy
• planning and facilitation of leadership summits to stimulate innovation and align objectives

Ms. Spada manages and directs all functions of the consulting firm she founded in 2001, digitale inc. Under her direction, the firm provides strategic planning and management services to support “high-performance” initiatives and investments for its diverse and dynamic client base. Ms. Spada has an established track record of creating success for tech entrepreneurs, corporate visionaries, scientific research leadership, and private investors, many of whom have been long-standing clients and colleagues.

Ms. Spada has been recognized by the White House and the European Commission for her contributions to supporting science and technology policy and achievement. She has appeared on the cover of the USA Today Money section focused on the future of technology and contributes to many digital economy events and initiatives. She is dedicated to supporting the evolution of our communities and society with transformative thought leadership and the beneficial use of disruptive technology.

Ms. Spada currently resides in the northeastern region of the United States with her husband, two children, and two energetic Portuguese Water Dogs.