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The Shane Project is an independent charity for people living with Multiple Sclerosis (MS), their families and Carers. It was founded in April 2002 by Norma McFarlane when her two sons were diagnosed with MS. The charity is named after Shane, her eldest son who was diagnosed with Primary Progressive in 1993 but sadly passed away in December 2003.

Based on Norma’s personal experience following Shane’s illness – the lack of available support which was further compounded by isolation, prejudice and the stigma – prompted Norma to set up The Shane Project, with a focus on providing support to those with MS from black and ethnic minority people (BME).

The Shane Project complements the work of the MS Society and other associated agencies by filling in gaps in services for people with MS, their families and Carers by offering personal support, advice and information in a safe and friendly environment

Mission Statement

The Shane Project seeks to develop independence awareness and understanding through the provision of support, information and advocacy that empowers those living with MS, including Carers and family members.

Aims & Objectives

The Shane Project aims to raise awareness and understanding, reduce isolation so as to help improve the quality of life and independence of people living with MS. To achieve this The Shane Project provides:

  • A monthly Network Club (NWC)
  • A monthly teleconference
  • Annual Quiz Evening
  • Outreach and awareness raising opportunities
  • Volunteering opportunities and support
  • Quarterly newsletter
  • Telephone helpline and befriending support

Support Provided

The Shane Project cannot provide medical advice but the Charity is a first port of call for someone newly diagnosed with MS seeking further information, advice and a listening ear.

We are available to provide information on a range of issues ranging from welfare benefits, identification of useful resource services locally such as, for example, therapy centres, carers support network and other networking opportunities within easy reach.

Our members, the majority of whom have MS themselves, provides a friendly contact so as to enable you to offload, share and work through any confusion by exploring different coping strategies. If we are unable to provide immediate advice to someone we will be able to point them in the right direction.

Formal Partnerships

  • Carers Partnership Board
  • Physical Disabilities Partnership Board
  • Service User’s Reference Group
  • Personalisation Support Planning and Review Working Group,
  • Nurses Fellowship North Middlesex Hospital,
  • Rotary Club of Enfield Chase
  • Enfield Sickle Cell Support Group,
  • Enfield Lupus Support Group
  • Kings College Working Group on long term neurological conditions
  • multiple caring role and replacement care
  • The Enfield Chase Rotary Group
  • Enfield Voluntary Action.

Why African \ Caribbean & Ethnic Minority People?

It is well documented that people with MS from BME communities are hard to reach and suffer from isolation, compounded by stigmatisation, ignorance, lack of services and facilities to support them as well as increased discrimination and prejudice even within their own communities.  Disability of any type let alone MS which has no known cause or cure is seen as a taboo or curse and people shy away from talking about it leaving the affected isolated and rejected.