How we support you

Have you or a family member been diagnosed with a leukodystrophy? We understand the information you have received may be new and confusing and it may be difficult to know where to go for further advice and information. This is where we can help and support you.

Alex TLC support services have a wealth of experience and knowledge to help you through all aspects of living with a leukodystrophy whether you are newly diagnosed or were diagnosed a while ago. We are here to support you, your family and friends, through practical and emotional support as well as accurate medically checked information relating to the many types of leukodystrophy.

The rarity of these conditions means affected individuals and their families often experience difficulties accessing adequate needs-led support and services in the local area. We provide a support network promoting awareness and understanding of the diseases and we work in partnership with you and your family, as well as developing relationships with local professionals.

Find out more about our:

Information
We can help people learn more about their condition, symptoms, services and treatments.

One to one support
We want everyone to be able to access the help they need to cope with their condition. Our support is accessible online, by email, phone, or via home visits.

Peer support
Through our Peer Support Network we can put you in contact with others who are in a similar situation whether they have the same type of leukodystrophy or they have very similar symptoms: this can be especially useful if you have one of the rarer or unnamed leukodystrophies where it may be difficult to find someone with the same condition.

Video Conferencing support
We provide video conferencing support where needed. We are taking an approach of ‘charity as a broadcaster’ and ‘support group facilitator’ by using contemporary technology software to facilitate a cost effective and scaleable support platform for our beneficiaries.

Through video conferencing software we are be able to create support networks, provide information and highlight our charity activities. This new strategy combines the successful elements of our Community Weekend with the vital role of our Support Service Manager as video podcasts and private support services.

Grant programmes
Means tested grants can provide access to care, equipment or therapy not available through statutory services, including support during Bone Marrow Transplant or Gene Therapy.

Events
Events like our Community Weekend Conference help to raise awareness of leukodystrophies and make information and support more accessible. We bring together patients, families, doctors and scientists to share experiences.

Campaigns and projects
We support research initiatives that help improve best practice in prevention, early diagnosis and treatment of leukodystrophies.

Research and clinical trials
We promote medical research by constantly evaluating the specific needs of the leukodystrophy community. Sharing our findings ensures this research has optimal impact for patients.

Professional partnerships
Working with the NHS, medical specialists, universities and pharmaceutical companies broadens our access to resources and the funding and research that underpins our work.

Ways to contact us

We appreciate that picking up the phone and asking for help can sometimes be daunting, so for many people the first contact they have with the charity is through email as this is often the easiest way especially if you or your family member has recently been diagnosed. We will always answer your email as quickly as possible.