Reverse Rett Weekly Blog

We produce a weekly blog to share what we’ve been up to, information from the rare disease community and pieces from families living with Rett Syndrome.

We want to bring the UK Rett community stories of our activities, things we’ve found interesting, and updates from research as well as the real life thoughts and experiences of families living with Rett Syndrome.

We’ll be posting the blog every Friday. If you’d like to share your own story on our blog, please contact

This week’s blog comes from our Events and Campaigns Co-ordinator, Beth Johnsson.

It used to be a truth acknowledged in the Reverse Rett office that there were peaks and troughs in activity and intensity throughout the year, and that July and August were ‘quiet’. Not so these days. Which, of course, is exactly the way we want it. Rett Syndrome doesn’t give our children a break for the summer months, so fighting it shouldn’t get cut any slack either!

Last week was as busy as ever, with a great deal of focus concentrated on event and campaign planning for the coming months. Foremost in our ‘event’ minds is our tenth anniversary London gala, and for those involved in planning it, November suddenly doesn’t feel so far away!

Following a visit with Hazel to the venue to firm up room details and start creating décor designs, Rachael and I met on Monday with Charlie Talbot from Talbot Productions, who has produced our London event free of charge for the past six years. Charlie is great at reigning in our sometimes over-ambitious plans at the same time as challenging us to meet the highest standards, and his years’ of event experience and expertise consistently help to make our vision of the event a reality.

Inevitably, it’s also always a meeting which generates a long (even longer) to-do list and numerous avenues to explore/follow-up, but it also always leaves us invigorated and energised to move forward.

Our scheduled London Committee conference call, which took place the following evening, was then a great opportunity for us to update the committee and pass on that energy! Tuesday night’s call included a new committee member, Jo Snyder, calling in from Switzerland and generated a host of exciting ideas and action points which we will all now be working on.

The committee are crucial to the event’s success, helping to sell tickets, bring in fantastic auction and raffle prizes, secure sponsorship and inspire support from others. Now that all the key details of the event are in place and ticket sales are underway, these areas become increasingly crucial and are the elements which will make it possible for us to reach our ambitious (but definitely not over-ambitious!) £200k target!

As the week moved on, so too did the planning stages, not only for the gala but also for other events on the horizon. Final confirmation of the venue for our Edinburgh Discovery Day in September meant we’ve been able to start working on the details and to open registration! With Sir Adrian Bird, Dr Stuart Cobb and Professor Santosh confirmed as our speakers (and a view of Edinburgh Castle during lunch!), we’re now working on the specifics of the agenda and building in workshops which will be of most value to the families coming. It’s fantastic to see the spaces already filling up and with so much to be positive about in research, this is a really exciting event to be working on.

October follows September and with it, Rett Syndrome Awareness Month and our fourth annual global virtual run, which has also opened for registration this week. As we launch and plan the details for this event, we are also working on a number of other Autumn/Winter campaigns at the same time as booking dates and researching/visiting/exploring venues for events in the Spring. In short, it’s far from ‘quiet’!

Speaking of ‘quiet’ though, here’s something from the past week which has happened quietly, unexpectedly and wonderfully. Last month a concert was held in Corstorphine, near Edinburgh, by Rudsambee Choir, in honour of local girl Ellie Taylor. The concert was a great success, raising nearly £1000 and hugely enjoyed by the audience. One audience member, however, was so moved by what he/she heard about Rett Syndrome and the work we do, that they have since made an anonymous donation of £17,000 – £1k for every member of the choir. Just amazing. The impact of moments and kindness like this can never be over-estimated and it just goes to show that we must all always speak up (or even sing out!) clearly and loudly for our children – we never know who’s listening.

Meanwhile and not so quietly, the express train of the school holidays hurtles towards us and we know that the next few weeks will pose extra challenges – a 6-week juggling act with a few more balls in the air than usual. We know that for many of you the holidays are daunting too, that battling with queues and crowds with a wheelchair, or providing sufficient stimulation for a child who can’t create their own, or dealing with the sheer physicality of having her home all day, or feeling guilty about letting the TV shows run on tape loop, or watching other families picnic, swim, day-trip etc without issue, is hard. We know. But just as we know we’ve got what it takes to not drop any of those balls, we know you do too. You’ve got this.