Name of Organisation: Alex, The Leukodystrophy
Address: 45 Peckham High Street, London SE15 5EB
Telephone Number: 020 7701 4388
Email Address: email@example.com
Registered Charity Number: 1106008
Prevalence of Condition (if applicable): at least 1:15,000
What is Leukodystrophy?
Leukodystrophies are genetic disorders primarily affecting the white matter of the central nervous system (i.e. the brain or spinal cord). The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In some cases, they may cause death.
There are over 90 identified inherited or genetic leukodystrophies, with some so rare they are yet to be named. Alex, The Leukodystrophy Charity (Alex TLC) focuses on the similarities between these conditions, bringing together all affected within a community of Tender Loving Care.
What support is available?
To address the multiple, complex issues a leukodystrophy diagnosis can bring, the charity delivers:
- Practical support, advice and information
- Individual packages of support, including home visits and advocacy
- A grant programme for beneficiaries
- Development of peer-to-peer networks which empower families and help them realise they are not alone
- Awareness raising of leukodystrophy amongst members of the public and health professionals
- Research promotion and funding
Collaborating with specialists and stakeholders worldwide, we work towards prevention of and best practice in treatments and care for leukodystrophy patients and their families.
Breaking Down Barriers project overview
Our two year project will scope and explore the needs of those affected by leukodystrophy within marginalised communities. Initially this will take the form of identifying and recording ethnicity data from existing beneficiaries. Once identified, we will use their experiences to assess barriers to engagement alongside educational and information needs through surveys and focus groups. The second year will focus on the collaborative development of strategies to create meaningful and useful resources for these communities.