HELP GET ALD ADDED TO THE UK’S NEWBORN SCREENING PROGRAMME
End young deaths from Adrenoleukodystrophy (ALD)
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.
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, 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 recently started having seizures.
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.
Below are 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.
Do you have any questions about our campaign, or would you like any further information?
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