Help get ALD added to the UK’s Newborn Screening Programme
End young deaths from Adrenoleukodystrophy (ALD)
We are campaigning for Adrenoleukodystrophy (ALD) to be added to the UK Newborn Screening Programme.
ALD is a rare, devastating terminal genetic condition. Without early diagnosis, treatment is often too late, leaving young boys in a vegetative state with the likelihood of death occurring within two to four years.
Explanation of ALD
Please visit our ALD explained page to find out more about Adrenoleukodystrophy (ALD).
This includes symptoms of ALD, cause of the condition, related news, leukodystrophy research, possible treatments and useful links.
Campaign updates
For updates about our own projects we are working on to support our efforts to get ALD added to the newborn screening programme.
We have also shared information about relevant external articles, discussions and projects highlighting why our campaign is important.
Make a donation
You can help to make a difference by donating now – help us get ALD added to the Newborn Screening Programme and save young lives in the UK.
Support our efforts by providing a donation to support our campaign.
Meet William
Too late for treatment after ALD diagnosis
If William had been screened for ALD at birth he would have been monitored for early signs of the disease and been given a bone marrow transplant which would have saved his life. Sadly he was diagnosed too late for any treatment. Following his diagnosis, William rapidly deteriorated and is now blind, deaf, has no speech, is fed through a tube in his stomach and requires expensive 24/7 care. He suffers with the most excruciatingly painful muscle spasms and has regular seizures.
A mother of two boys
Early diagnosis of ALD saves lives
Treatment is only effective before symptoms appear, and families need to know that they have the defective gene to ensure monitoring can be carried out to save their sons lives. Due to early diagnosis, Alex’s younger brother, Ayden, was able to have a bone marrow transplant (BMT) to halt the disease and now lives a normal healthy life.
Contact us
Do you have any questions about our campaign, or would you like any further information?
Please do not hesitate to get in touch by emailing info@alextlc.org