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05/04/2019

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 rachael@reverserett.org.uk

This week’s blog comes from our Events and Campaigns Co-ordinator, Beth Johnsson, who works from her base in Surrey.

Working remotely from the Reverse Rett office in Manchester can be a lonely beast at times: communicating via emails and phone-calls rather than in person and not being physically in the office to see what everyone else is working on can be a bit isolating. So weeks like this, with face-to-face meetings, are always welcome: a chance to catch up in person, chat in real time and escape the constraints of email delay!

Our annual board meeting took place this week, affording a valuable opportunity to catch up with each other and the Reverse Rett board of trustees. Our role is to provide updates about the different areas we’re working on and how the aims of our annual plan are being met. We prepare for this individually, so it’s always reassuring to see how our various pieces of the jigsaw fit together and to reaffirm that everything we do is underpinned by the same goals and principles. Sharing this with the trustees and getting their input/feedback is a really valuable process and helps us all to see the bigger picture.

This picture is brought into even sharper focus when we receive a research update from Reverse Rett Co-Founder and Trustee, Monica Coenraads, who joins us for the meeting from the RSRT office in the States via Skype (5am local time!) We’re parents, first and foremost, so naturally we’re eager to know how research is developing and, of course, cautiously excited to hear that the gene therapy clinical trial seems to be on track, as well as learning more about the other various strands of research in progress. I’m no scientist and some of the technical jargon is beyond my English degree boundaries, but what I do understand completely is that when we talk about hope, possibility and change happening, we are not wrong. These are exciting times and there’s no doubt that this update, along with everything else we share and learn throughout the day, injects fresh vigour and determination into all our steps. Lunch is a welcome energy-boost too!

The rest of my week takes place largely in front of my laptop. Wesley and I have been working on finalising the agenda for our upcoming Discovery Day (only a very few spaces left) and starting to fine-tune the details such as workshop requirements, catering and filming logistics. I’ve also been busy researching possible venues for our Discovery Day in Edinburgh; plenty of beautiful places but not so many which are fully wheelchair accessible and equipped with appropriate changing facilities. The search goes on and we welcome suggestions from local families.

Scotland remains very much on my mind, in fact, as a great deal of my week is focused on building preparations for our fourth annual run in North Berwick. Catherine McKinney (Reverse Rett Trustee and mum to Eliza) and I work away on this in the background from January onwards, although the start of April sees momentum building as we realise that suddenly June 23rd is not so far off!

May 25th seems even less far away, so this week I’ve been continuing work on our Sole Mates Walk and on building our team for this challenge, as well as sorting out the logistics of meeting points, support teams and registration admin. On a personal level, we’ve been trying to figure out how both myself and my husband can join the walk, but like many families, we struggle to find anyone who can take care of Hannah and her siblings for the full day. As an alternative, Vincent plans to lead another 25kms walk in London later this year, for those who can’t make it in May, so that’s another event to get under way . . .

For now, our other main annual event dominates my week too: preparations for our London Gala continue and Wesley and I have been working on finalising the ticket sales site to be ready to go live. Nearly there! Other details are coming together and, whilst it can be frustrating to hit brick walls with some aspects, it’s mostly exciting to start seeing the evening shaping up into a memorable event.

In the background to all of this have been our own personal struggles with Rett Syndrome which have been harder than usual for some this week. An awareness and understanding of what we are dealing with at home is part of our daily consciousness and a necessary aspect of our successful teamwork. But it’s also a constant reminder of why we do what we do and why, no matter what’s going on at home, we’ll keep on showing up and getting it done.