Suzanne Solvyns

Executive Director & Co-chair – CJD International Support Alliance

Suzanne first heard about Creutzfeldt-Jakob disease (CJD) in the early 90’s, when a media report announced that 2100 Australians, who had been treated with human pituitary hormones for infertility and short statue, were now at an increased risk of developing CJD. This followed the deaths of four women who had died from Iatrogenic CJD due to contaminated pituitaries in batches of human pituitary hormones in Australia.

Suzanne became a founding member of the CJD Support Group Network (CJDSGN) in 1993 as NSW Co-coordinator and in 2004 was appointed Director. She was instrumental in the expansion of the network to offer support and assistance to all Australians affected by prion diseases.

In 2006 Suzanne had the dream of forming a global network to help expand support for patients and families globally and together with Florence Kranitz, president at the time of the CJD Foundation US, the CJD International Support Alliance (CJDISA) was formed at the first meeting in the lobby of the Washington Court Hotel US. Suzanne took on the role as co-chair of the alliance with Florence until she retired in 2015 when Deana Simpson then become co-chair with Suzanne. In 2023 the CJDISA became a not for profit company with Suzanne, Deana joined by Professor Richard Knight as directors.

Suzanne received an ‘Order of Australia Medal’ in the 2019 Queen Birthday honour list for her commitment to community health

Deana Simpson, MSN, RN

Executive Director & Co-chair – CJD International Support Alliance

Deana Simpson, MSN, RN is a nurse, advocate, and leader in the prion disease community whose life has been profoundly shaped by the impact of Familial Creutzfeldt-Jakob Disease (fCJD). After losing her mother and brother to the disease—and a total of 23 family members over several generations—Deana committed herself to supporting other families facing the devastating realities of genetic prion disease.

Following her mother’s death, she founded CJD Insight, an organization dedicated to helping individuals and families affected by CJD, with a special focus on the unique challenges of familial CJD.

Deana is also a founding member of Creutzfeldt-Jakob Disease International Support Alliance (CJDISA). In December 2015, she was appointed co-chair of the organization following the retirement of Florence Kranitz. In 2023, when CJDISA formally became a non-profit company, Deana was appointed as one of its Executive Directors. Through her leadership, advocacy, and personal experience, she continues to work toward greater awareness, support, and hope for families affected by prion diseases.

Professor Richard Knight

Director – CJD International Support Alliance

Professor Richard Knight received his BA degree in Philosophy, Politics and Economics at Oxford University in 1972, his medical degree in 1977, his postgraduate medical qualification in 1980 and became a Fellow of the Royal College of Physicians of Edinburgh in 1993.

Professor Knight is presently serving as Director of the UK National CJD Surveillance Unit and has a Personal Chair in Clinical Neurology at the University of Edinburgh with an Honorary Consultant Clinical Neurology post in the Department of Clinical Neurosciences, Western General Hospital, Edinburgh, Scotland.

Professor Knight spends approximately 50% of his time divided between CJD Surveillance and research and 50% devoted to clinical services and teaching. He has authored and co-authored many CJD related papers related to sporadic, variant, genetic and iatrogenic forms of the illness.

Professor Knight also has a long involvement with CJD lay and charity organisations, currently being Chair of the UK National CJD Support Network Management Committee and an invited member of Friends and Advisors Group to the CJD International Support Alliance.