Our Families’ WhatsApp group has two lovely parent moderators – Amy and Becky. They provide support and assistance and ensure the group runs smoothly and safely. Read our Q&A and find out more about them both below:

Amy lives in the South East of England and is mum to Ollie, who has SMA Type 1.

Becky lives in Scotland and is mum to twins, Finn & Zara, who both have SMA Type 2.

Q&A

SMA UK
Why did you decide to volunteer as a moderator?

Amy
I’m passionate about raising awareness for SMA and am keen to connect with and enable families to support each other. Diagnosis was a very lonely time for us, and I feel it is important to be part of something that I know could have helped me had it been around at the time.

SMA UK
What type of discussions do you expect to take place?

Becky
The main topics are around a whole range of different challenges with everyday life, as well as good old emotional support and understanding!

SMA UK
What would you say to someone thinking of joining the group?

Amy
Don’t overthink it, just join! It can be daunting the thought of joining a group where you don’t know anyone and yet you may end up baring your emotions, as facing diagnosis of your child with SMA is tough. We’re a supportive network and there will always be someone to share with should you need it.

Becky
I would say to someone joining the group, enjoy the chats, knowing that you can feel safe talking about your experiences of caring for children with SMA. None of us are experts but we can all relate to each other in some way or another.