Can you talk the ears off someone about your child with Rett?

By Helen Simmonds

Over the years of being involved with Reverse Rett, my involvement has taken many different paths. I’m now vice-Chair of the charity but I’ve always done different things to fundraise, raise awareness and support the organisation on a practical level too.

Commonplace for all of us with children with Rett, is that the people you reach out to for support have often not heard of the condition or of Reverse Rett.  

But when they do hear about it, especially at a very personal level, they are often compelled to want to help, knowing that their efforts can directly help our children potentially live better, healthier lives, through research into treatments and ultimately a cure in whatever form that may bring. 

Within an 8 mile radius of my own front door there are 5 families with a child with Rett, with more close by in surrounding counties/boroughs.  That makes it feel less a ‘rare’ thing and more a community thing. And many people do like to help and support their own communities.

A couple of years ago a fellow Trustee of Reverse Rett and I were invited to talk at a local ‘Probus’ group.

Probus groups are formed of retired business professionals from all walks of life.  They often have external speakers go in and present to the group about their speciality subject and those speakers are often paid for their time.  

Our speciality of course was Rett Syndrome and instead of paying us, the members were asked to make a donation in the bucket on their way out.  Our talk inspired almost £300 in donations that afternoon.

More importantly, our talk inspired two other members of the audience to take the charity forward to other groups they were involved with; the Freemasons being one of them.  

I went and met with one of these people over a coffee and we chatted further about Rett and my daughter and he informed me that he wanted to make Reverse Rett his charity of the year.  

A knock-on effect of that was that two more Freemason Lodges got to hear about Reverse Rett too and they also made us their external charities of the year, as they were so compelled by our story.  

Through connections at the Freemasons I was also contacted by another group – the Ladies Freemasons.  In my ignorance, I didn’t even realise such a group existed but they do, and are indeed very active.  

There are Lodges Countrywide and collectively they have raised hundreds of thousands of pounds for different charities. I was contacted by a lovely lady called Beverley Moss who was about to become Master of her particular Lodge and as such, was about to nominate her chosen charity for the year. 

She had chosen Reverse Rett for a number of reasons but the main one being that she felt a connection to a condition that affects so many girls and women.  

Of course recognising that we have boys within our community too, but a predominately female condition lent itself well to her Lodge’s members and their fundraising activities.

Beverley also encouraged me to tell others about the Freemasons and the Ladies Freemasons as there are many groups up and down the country who’d be willing to help our cause.  

Ahead of International Women’s Day on 8th March, maybe this is something you could do, to empower your fundraising efforts, especially if you have a daughter with Rett?  

I’m not a confident public speaker – at all – but over the years I’ve now stood in front of a lot of people to tell them about Rett. 

I never go in to huge detail of research, it’s always a more personal account than that and that’s something I know inside out, as we all do as parents, so can talk with a little confidence I guess.  

But meeting people face to face over a coffee for an informal chat I can do, as many more of us could do, and can confidently talk their ears off.  

If you’d like to start fundraising or perhaps feel you’ve already exhausted your connections or friends or families, then maybe consider reaching out to these local groups near you.  

Just an email or letter to groups such as:

The people who attend these groups are so well connected and in my experience so far, full of lovely people willing to help.  

And if you happened to be invited to talk and felt it was something you’d like some support with, there may be one of the Reverse Rett team who could come along and talk with you.  

Helen also runs Rocks for Rett (UK) – A Facebook page for little pieces of art, painted and hidden for others to find. Each rock with details of Reverse Rett on the back, raising awareness of the condition, Reverse Rett and our work and may be even generating some unexpected support to help push forward treatments to help our children suffering in the grips of Rett.

By Helen Simmonds, mum to Lauren and Vice Chair of Reverse Rett