Posts by Charlotte Russell

The Muscle Atrophy Test

The Muscle Atrophy Test

Today we are launching a new video campaign asking people to sign the petition, details of which can be found...

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Emotional Impact of an SMA diagnosis

Firstly I should say that I don’t expect the things that we have found or that¬†have worked for us to...

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Soon to be 90 year old great grandmother to do a 5K sponsored walk for Helena.

Helena’s great grandmother, Ivy Gregory, who will be 90 this coming July is to do a sponsored walk for Helena...

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Help for Helena Smugglers Restaurant Dinner

We kicked off our first Help for Helena event on the 22nd April with a fundraising dinner, auction and raffle...

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  As you all know I’m very passionate about awareness of Spinal Muscular Atrophy (SMA), a devastating motor neurone disease,...

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Egg on your Face Challenge

Happy Easter everyone! Today we launched the “Egg of your Face” challenge to raise awareness and funds for SMA. We...

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Happy Mother’s Day

Today me and my girls have celebrated mother’s day with my mum. I’m so thankful for celebrating this day with...

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Our case for ending placebo controls in clinical trials of Nusinersen to allow for expanded access.

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Happy 1st Birthday Helena

It’s been a busy month for Helena. Unfortunately she deteriorated in terms of her range of movement, she can no...

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