OUR SCREEN OUR BOYS CAMPAIGN

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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.

Alex - The Leukodystrophy Charity

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, 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.

 

 

 

 

 

 

 

 

 

 

 

 

Alex - The Leukodystrophy Charity

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.

 

 

 

 

Alex - The Leukodystrophy Charity

WANT TO LEARN MORE?

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.

Alex - The Leukodystrophy Charity

The Generation Study – article raising concerns

Alex - The Leukodystrophy Charity

Gene therapy for CCALD is not available in Europe

Alex - The Leukodystrophy Charity

ALD and MLD to be included in Generation Study

Alex - The Leukodystrophy Charity

Dutch ALD newborn screening

Alex - The Leukodystrophy Charity

Newborn ALD Screening Study: Summary Report

Alex - The Leukodystrophy Charity

Newborn Screening for ALD in Taiwan

Alex - The Leukodystrophy Charity

Sex-specific ALD newborn screening in Netherlands

Alex - The Leukodystrophy Charity

Get involved in our Newborn Screening Study

Alex - The Leukodystrophy Charity

Our Scoping Study with Genetic Alliance

Alex - The Leukodystrophy Charity

Be involved in our CCALD Research Study

Alex - The Leukodystrophy Charity

New Born Screening for ALD Round Table

Alex - The Leukodystrophy Charity

Important : Newborn Screening Consultation Outcome

Alex - The Leukodystrophy Charity

Matt Hancock’s mission to drive expansion of NBS

Alex - The Leukodystrophy Charity

We have hit our 10K Signature Target

Alex - The Leukodystrophy Charity

APPG Meeting – Newborn Screening- 9th June 2021

Alex - The Leukodystrophy Charity

Our ALD NBS Campaign featured on BBC News

Alex - The Leukodystrophy Charity

NBS for ALD discussed – Leader’s Questions 20.05.21

Alex - The Leukodystrophy Charity

Never Forgotten – not forgetting ones we’ve lost

Alex - The Leukodystrophy Charity

Scots grandad living with ultra rare incurable disease

Alex - The Leukodystrophy Charity

Family communication following ALD diagnosis

Alex - The Leukodystrophy Charity

Affected by ALD/AMN? We need your help!

Alex - The Leukodystrophy Charity

Why is ALD Newborn Screening so important?

Alex - The Leukodystrophy Charity

Why is ALD NBS not recommended?

Alex - The Leukodystrophy Charity

Alex TLC patron, Britt Ekland, Grandson has ALD

Alex - The Leukodystrophy Charity

Newborn Screening Update

Alex - The Leukodystrophy Charity

UK Newborn Screening Patient Charter

Alex - The Leukodystrophy Charity

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

Alex - The Leukodystrophy Charity