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We are thrilled that Sophia joined Multi School Council council team. At her age I was still figuring out which puddles were safe for jumping in. Super proud!

It’s the happy face in the end :)

Final day of CNMDOttawa excellent #OttawaNMD conference on Neuromuscular Disease & Biology. Now at #SpinalMuscularAtrophy session, w/ Allison Ebert Tom Gillingwater Charlotte Sumner & Christiano Alves, chaired by Rashmi. Inflammation, developmental disease, base editing

Another fantastic day at BGC Charity Day raising funds & awareness for so many meaningful causes. Thank you for having us.🙏 Shout out to our lovely ambassadors & families Davina McCall, Aiden Mitchell & PhiaSophia - your support means everything! #bgccharityday2023

Just saw this Davina McCall :) gettyimages.co.uk/detail/news-ph…

Thank you for the picture Jon Richardson and thank you for supporting Haven House as they have been so helpful for us!! #BGCCharityDay2023

Happy Halloween #Trick_or_Treat #Wednesday

It nearly did not happen because of Sophia’s up and down with health. But after visit to the hospital on Friday night we were able to come to Friends of Shelby ball on Saturday to say thank you to this wonderful charity and people who support us as well as meeting Shelby Newstead

Well done! We hope to continue making difference in the world!! Multi School Council

Sparkle like a 💎

Dear Taylor Swift as you start dazzling #Eras Tour in the U.K. we could not get wheelchair accessible tickets to see you and your amazing Team Karen Chuang . We have to settle for a brush 🎤 and have our own #champagne problems #wheelchairs #accessibility

My lab is supporting two A-level students under the "Research and Experience Placement Programme" STEMPOINT Getting excited to introduce the roundworm #Celegans & the motor neuron disease #SpinalMuscularAtrophy we have been fighting for! #STEM Herts Research University of Hertfordshire

After listening to Marshall Mathers our Sophia came up with: Toby Maguire got bit by a spider Eminem got bit by a goat You see me, it was a duck Like what the “beep”?… The irony is not wasted here! Love her to bits! #slimshady #deathofslimshady

Summer holiday!

It was lovely meeting you John Terry today BGC Charity Day . You are a very kind person!

Sometimes I look at her and my heart feels with love. She is so beautiful! And there is also Sophia in this picture.

What a night for a Halloween fright as Sophia goes out trick or treating for the first time!

I’m writing about the wait to see the details of Labour’s benefits proposals and I’d like to include (anonymously) the emotional consequences for the disabled people who rely on them. What’s the impact on you waiting? How do you feel? Very much appreciated.