Jenson & Lettie - Our Spinraza Journey - Always follow your dreams

12/03/2026

Our SMA community has been waiting with anxiety for the news this week. I’ve been checking every day for the decision now more of a wait!

We were hoping to bring you news on Spinraza and Risdiplam this week. Unfortunately there is a delay due to further discussions being necessary. We understand this will be extremely frustrating for the community, but for the long term we hope you understand that this shows the ongoing commitment by the companies, NICE and NHS England to reach a positive and comprehensive agreement. We want to reiterate that as NICE previously stated it is a case of tying up loose ends, we know how much of an impact this will have on the community, and we will continue to advocate and push for these discussions to conclude as quickly as possible.

03/02/2026

🤞🏻 Today is the day that the SMA community may finally be able to breathe knowing that their life saving treatments are approved on the NHS.
Jenson & Lettie have been having Spinraza the last 7 years. It has been life changing. To think what life could have been like without treatment is unimaginable. I pray NHS England approve Spinraza and Risdiplam for all today on the NHS for Adults and Children, For all types 1,2,3 and 4. Now we wait! 🙏🏻

30/12/2025

Christmas 🎄

31/10/2025

Happy Halloween 🎃

05/09/2025

11/08/2025

Dose number 21 of muscle juice today!

05/08/2025

This is a great step forward.

https://www.facebook.com/share/p/16E9yMS1uJ/?mibextid=wwXIfr

BIG NEWS for the SMA community! 📣 The new SMA MTA External Assessment Report (EAG) for Spinraza & Evrysdi has been published. We are pleased to see a focus on more patient voices & real-world evidence. Our aim is for full, unrestricted licensing for ALL SMA types and ages. SMA UK will lead the patient group response to NICE. Read more 👉 smauk.org.uk/cnfq

04/08/2025

**August SMA Awareness Month** So proud of these two! We are so grateful for the treatment they receive, it will never cure but helps their muscles to be stronger. 💙🩷

17/06/2025

Jenson’s Boccia training is going well and making progress already! Keep up the good work our boy 💙 thanks to his coach

02/06/2025

Super excited to start his training tonight!

We went to a powered wheelchair sports event a couple of months back and Jenson really enjoyed playing Boccia. We were then contacted by the coach for Team GB who wanted to train Jenson as she was really impressed with him and his eye for detail and feels he can go far in the sport. He will be able to compete for Boccia UK in the Paralympic’s when he’s 16, so for now he will be training every week until he’s ready. Go Jenson! So proud of you 💙