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...


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...

2015-10-31 18.45.43

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...


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...


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


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...


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...

2015-10-08 12.54.26

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

Helena 1

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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