My husband, Ben, has AMN (adrenomyeloneuropathy). Unfortunately, so little is known about this rare disease that it took over two years to get him the correct diagnosis. As of now, there is no cure or treatment. I want to help spread awareness for AMN because there may be some sufferers out there that have no idea what is going on, much like Ben and me at the beginning. Awareness and education will bring support, understanding, and, hopefully, a cure.

ALD Life is the leading charity focused on raising awareness and money for those affected by the disease.

Here are a few facts:

- AMN is carried by women and passed to their sons (X-Linked)

- The disease is currently untreatable and incurable

- Damaged axons are unable or delayed in sending signals from the brain to the legs which limits mobility

- AMN only affects 30,000 people world wide

- Men usually show symptoms any time from their mid-twenties

- Symptoms include pain and stiffness in the legs which results in difficulty walking and lack of balance and usually progresses over time

- No two cases are identical; deterioration and symptoms do not always occur at the same time or rate

- 20-30% of AMN patients develop nerve damage in the brain which can cause dementia-like symptoms

- AMN often correlates with adrenal insufficiency and failure (Addison's disease)

(more information, like the above, can be found at www.aldlife.org)

ALD Life have already provided many families with the support they need such as the latest updates in the field, contact details for the best doctors, and financial support. Their website (www.aldlife.org) is chock full of information about AMN and ALD and it's unmatched. AMN is a form of ALD (adrenoleukodystrophy). ALD typically affects young boys both physically and mentally. It is terminal.

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