Our Support Services Manager provides one to one support sessions. These sessions are accessible via zoom, by email, phone, or via home visits. We want everyone to be able to access the help they need to cope with their condition. We provide support for affected individuals and also their family members.
We have condition information about the different types of leukodystrophy. There is information about the condition, symptoms, services and possible treatments.
We hold monthly online community meetings on zoom. These provide an opportunity for members of our community to connect, ask questions and offer support to each other. These meetings are for everyone to attend, whether you are an affected individual, parent or family member.
Through our Connecting Together programme we can put you in contact with others who are in a similar situation. It can be helpful to talk to someone who understands what you are going through, whether the same type of leukodystrophy or experiencing similar symptoms, they will understand the challenges you are facing.
Our counselling service is available free of charge for all our adult community members, including both affected individuals and family members. Our BACP (British Association for Counselling and Psychotherapy) registered counsellor, Jenna Jones, offers up to 8 counselling appointments on a weekly basis.
We offer grants to individuals and families affected by leukodystrophy. Our grants are means tested to ensure those most in need get the help they require.
We hold an in person community weekend which takes place every year. This event provides an opportunity to make information and support more accessible to our community members. We bring together individuals, families, doctors and scientists to share experiences and information.
We run campaigns to raise awareness of leukodystrophy. This includes our campaign to get ALD added to the newborn screening programme in the UK. Our charity projects are focused on developing resources and information to benefit our community members.
We promote medical research by constantly evaluating the specific needs of the leukodystrophy community and sharing this information with researchers and pharmaceutical organisations. We provide monthly research summaries, with information about recent studies and clinical trials, to keep our community and professionals up to date.
We are the patient organisation representative for the NHS England Inherited White Matter Disorder (IWMD) Service and Registry. We are working alongside NHS professionals, including consultants and nurses, to support the development of these services. We attend clinics to provide information and support to individuals and family members.
Please read our Support Services Policy which details the different forms of support we offer and the support we are unable to provide. If you have any questions, please email info@alextlc.org
