We urgently need donations so that we can continue to support families, provide information to health professionals and fund research to find a cure for MLD.
We want to fund
We need funds to help us support families suffering with MLD. At present, when we hear about a new diagnosis, we stay in close contact and organise a visit to the family from our metabolic nurse, who can ensure that the family are receiving all the help available, and organise further medical appointments, if appropriate. Families are directed to our website and Facebook group where they can interact with other families. We also provide leaflets and other information.
We also need to raise funds to organise a Fun Day every year. As MLD is a rare disease, families are spread all around the UK and rarely get a chance to meet up. Our Fun Days provide a safe environment where families, including sufferers and their siblings can meet and enjoy each other’s company, and exchange information.
MLD Support Association UK provides valuable information for health professionals. We also organise and fund a bi-annual Scientific Conference where scientists and clinicians who specialise in Leukodystrophies, both from the UK and overseas, can meet up to learn about current treatment, research and forthcoming and on-going clinical trials. Health professionals from a range of disciplines have a rare opportunity to meet and exchange information.
Our next Conference is planned for 2020.
MLD Support Association UK is currently working on a Registry of all known cases of MLD in the UK. Patient information in this registry will be used to create a natural history of MLD types for research and experimental clinical trials to better understand and develop new treatments. Researchers will be able to access the MLD Registry to locate people who may be eligible to participate in particular studies, such as studies to test new treatments.
It is extremely expensive to set up this Registry, but we feel it will be invaluable in the search to find a cure for MLD.