Submitted by Paul Edwards on Monday 5th December 2022
Published on Tuesday 13th December 2022
Current status: Closed
Closed: Tuesday 13th June 2023
Signatures: 73
Relevant Departments
Tagged with
10 years ~ balance ~ Confirmed ~ Cure ~ Damaged ~ date ~ disease ~ genetic ~ Government ~ investment ~ Kingdom ~ Mild ~ part ~ progress ~ RARE ~ Responsible ~ Severe ~ system ~ UK government ~ Ultra ~ United Kingdom ~ Years
Research the ultra rare genetic brain disorder AARS2 Leukodystrophy
We propose that UK Government should invest in researching the ultra rare brain disorder AARS2 Leukodystrophy. There are only two confirmed scientific cases in the United Kingdom so we need investment to find treatments and a cure.
AARS2 affects the the brain and nervous system, causing damage to nerve cells in the cerebellum, which is the part of the brain responsible for balance. It is a progressive disease. It starts with mild symptoms like clumsiness and eventually leads to severe disabilities affecting all four limbs, speech, swallowing, and causes seizures.There is no cure or treatment. To date not much is known about the condition. AARS2 unfortunately is fatal and estimated lifespan is 5 - 10 years.
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