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CJD Support Network

About us

Learn more about our charity, including our vision, mission, management committee, and commitment to equality, diversity, and inclusion (EDI).

Who we are

The Creutzfeldt-Jakob Disease (CJD) Support Network (CJDSN) was set up in 1995 and became a registered charity in England and Wales in 2003 (charity no. 1097173). The CJDSN is staffed and governed by individuals with a personal or professional connection to CJD and prion diseases.

Who we are there for

CJD is one of a group of rare diseases called prion diseases. These are progressive and invariably fatal neurodegenerative diseases affecting 1-2 people per million of the population per year. The CJDSN exists for the benefit of all those who have a connection to CJD and prion diseases.

Our vision

An informed, supported, and connected UK prion diseases community.

Our mission

Providing accessible, accurate, and trustworthy information about CJD and prion diseases. Offering emotional and practical support to patients, carers, healthcare professionals, and those at increased risk of prion diseases. Connecting people with personal experience of prion diseases. Promoting high-quality care and encouraging interagency cooperation. Representing people with lived experience of prion diseases. Supporting prion disease research.

Annual Reports & AGM Minutes

Management Committee & Staff

Professor Richard Knight

Management Committee Chair. Richard is a Clinical Neurologist at the NCJDRSU in Edinburgh.

Anita Tipping

Management Committee Secretary. Anita is a Registered nurse, RSCN, she lost her son David to iatrogenic CJD.

Andy Tomaso

Management Committee Treasurer. Andy is a Chartered Surveyor, he lost his mother Carmelina to genetic CJD in 2007.

Beth Marsh,
National Coordinator

Employed as National Coordinator of the charity. Beth lost her dad Vernon to sporadic CJD in 2016.

Professor Simon Mead

Neurologist working at the MRC Prion Unit (UCL), London.

Brian Marsden

Retired accountant. Brian lost his wife Ann to sporadic CJD in 2017.

Dr Kate Dahill

Junior Doctor. Kate lost her aunt to sporadic CJD in 2012.

Margaret Leitch

Former National Care Co-ordinator and Senior Nurse at the NCJDRSU in Edinburgh.

Sean Horstead

HM Area Coroner for Essex. Sean lost his mother Gillian to sporadic CJD in 2020.

Dr Lizzie Hill

Former PhD student at the  MRC Prion Unit (UCL), London.

Andrew Takoushis

Former Charity Manager. Andrew lost his husband James to iatrogenic CJD in 2018.

Dr Diane Ritchie,
Researcher

Researcher at the NCJDRSU in Edinburgh.

Our commitment to Equity, Diversity, and Inclusion (EDI)

At the CJD Support Network we are committed to promoting and upholding equity, diversity, and inclusion in all areas of what we do.

At the CJD Support Network we are committed to promoting and upholding equity, diversity, and inclusion in all areas of what we do. We believe that everyone should be treated with dignity and respect, and that discrimination in any form is unacceptable.

Our commitment to this is strong and is shared by all members of our management committee. In particular, we are committed to welcoming and treating all members of our network with equity, regardless of their age, disability, gender reassignment, marriage or civil partnership, race, religion or belief, sex, sexual orientation, or any other aspect of their identity.

How we enact this commitment

Information

We offer information in a range of formats via our website, written materials, video content and telephone help line. Where information is required in a different format (for instance large font versions) we will support access by providing resources or linking in with other organisations to provide them. Where information is required in a language other than English, we will support access to this through sourcing translation ourselves or linking with other organisations to facilitate translation.

Support

We offer support in a range of different ways via our online community, telephone helpline, email address, online groups and in person meeting. We ensure that in person meetings are held in accessible buildings and ensure that any further accessibility requirements are enquired about and supported. Where required, we also offer financial assistance to enable attendance at in person meetings.

Inclusion and respect

Sexist, racist, homophobic, transphobic or otherwise offensive and inflammatory remarks and behaviours are not acceptable within the CJD Support Network. If any member of the support network feels that they have been discriminated against by the network or any of its members, the committee will investigate the complaint, listening to and supporting all involved (If the complaint is against a committee member, that member will not be part of conducting the investigation).

Any decision to exclude a person from the network due to discriminatory or harassing behaviour will be made with reference to the network’s constitution. The CJD Support Network will support people who feel they have been harassed or discriminated against, and will not treat them any differently because they have raised this.

Openness to feedback

We understand that we will not always get things ‘right’, and that there is always more that could be done to improve our work in terms of equity, diversity and inclusion. As such, we are open to any feedback on things that we could be doing differently and welcome suggestions for the consideration of the committee.