News - awareness

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

What to Say at Christmas

December 2022

Helpful information about what to say to someone who is grieving It can be difficult writing a Christmas card to someone who’s grieving. Lots of us worry about what the ‘right’ thing to say is.

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Book of Poems Featured on Radio Show

December 2022

Discussed on Midwest Radio Aisling Finn’s wonderfully powerful book of poems ‘Motherhood: Plot Twist’ was recently featured on Tommy Marren’s show on Midwest radio. This book was written by one of our beneficiaries – it is a wonderful and powerful book of poems about leukodystrophy and motherhood. She wants to share it with other families affected by rare disease to help others by letting them know they aren’t alone.

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Gene People Awards 2022

October 2022

Who will you vote for in the Gene People Awards? The awards are an opportunity to highlight the incredible efforts of individuals and organisations in improving the lives of people affected by a genetic condition.

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Tales from my travels

October 2022

In this post, Nick tells us of his experience adapting to travel with AMN. Let me introduce myself, my name is Nicholas, but you can call me Nick. I was diagnosed with AMN in late 2019. Since then, between the unrelated seizures and the tiny blood clot on the brain, I am lucky just to have the walking and balance problems so far.

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