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 firstname.lastname@example.org
This week’s update comes to you from Scotland, where the Reverse Rett team are gathering, ahead of tomorrow’s Annual Reverse Rett Run sponsored by Paris Steele.
This run will be the 4th consecutive annual run at the Archerfield Walled Garden in Dirleton, near North Berwick. We are grateful as always to our friends at Archerfield Walled Garden who allow us to hold the run there each year, pro bono, as well as holding numerous other fundraising events there throughout the year. This stalwart support happens because of the solid friendship between Reverse Rett Trustee, Catherine McKinney and owner of Archerfield Walled Garden, Reverse Rett Ambassador, Ellie Douglas Hamilton.
Catherine’s daughter, Eliza, has Rett Syndrome and it is due entirely to the generosity and kindness that Eliza has inspired from the community around her, that we are able to keep holding this run here, year after year and that so much support is behind it.
We are extremely grateful for the on-going sponsorship from Paris Steele. It’s heart-warming to see all the many beautiful raffle prizes which have been donated. Every year we are stunned to see all the hundreds of people who come out to take part, whatever the weather. Our love and gratitude as well to all the many volunteers who help bring everything together before the run and ensure that things run smoothly on the day.
In the last few days, Grant Palmer from Dovetail & Rabbet has been working on the handcrafted wooden medals in the evenings after work to get them all finished in time for the run. The wood for the medals was also donated by Caledonian Horticulture. You can see the beautiful medals in the picture above as Wesley, Catherine and Beth work together to put the ribbons in the last ones which have been delivered today.
There is so much involved in organising an run like this. The organisation on the Reverse Rett side, is largely down to Beth Johnsson, Events and Campaigns Co-ordinator at Reverse Rett. Beth works closely with Catherine and friends throughout the year and on the day to ensure that everything is in place. Today she has spent much of the day cycling around putting up signs along the course so that the many runners don’t get lost en route.
After the event, you’d think it would be time for a sanity break but Beth is already preparing for other imminent events, such as the second Reverse Rett Discovery Day which will be held at the Apex Grassmarket Hotel in Edinburgh on Sept 15th 2019.
Yesterday, Beth and Wesley went to check out the venue in person. With Professor Bird and Dr Stuart Cobb both confirmed to speak, we expect it will be a brilliant and informative day for all. Places are limited so please look out for registration information which will be on the Reverse Rett website soon.
Wesley came up to Scotland on Friday on the back of a trip to London to attend the AMRC Registries Workshop ‘Exploring Current Challenges’ on Thursday. As Reverse Rett Patient Registry Co-ordinator, Wesley is responsible for managing all the information within the Registry and ensuring that it remains secure, accurate and up to date.
As more and more treatments for Rett syndrome emerge, it is more important than ever that our UK Registry is efficient. We’d like to be able to add new features to the Registry such as the ability for families to view and update their own information. This sort of workshop, where lots of medical research groups of different sizes and incomes are sharing information about software they use and best practise in terms of registry management, is a gold mine for a charity like ours.
Although Reverse Rett is not a big charity, our aims are giant and so we pursue excellence in all areas. The UK Rett Syndrome Patient Registry, which holds your child’s personal information and gives us the ability to facilitate success in UK clinical trials for Rett is at the very top of our priority list.
Wesley has otherwise been found mostly swearing (just kidding) at his desk this week, working intensely to complete edits to the Rett Syndrome Health Checklist which is finally due to be published on line on both Rett UK and Reverse Rett websites this coming Tuesday 25th of June 2019.
We are very much looking forward to coming together with our UK Rett Disorders Alliance colleagues Becky Jenner and Yvonne Milne on Tuesday at the ‘Managing Complex Neurological Disorders in the Community’ Conference in Birmingham on Tuesday, where we will be sharing the Health Checklist with clinicians on a shared stand under the Rett Disorders Alliance umbrella.
This piece of work has been in development for over two years now and has been collated and edited by Becky and myself from the ongoing work and dialogue of the UK Rett Disorders Working Group. The checklist is a dynamic document and will be edited and added to on an ongoing basis.
There is no doubt however that the publication of the first iteration on Tuesday will be a relief to all of us who have been involved in this collaborative piece of work. It has certainly been a finicky and time consuming thing to work on, but above all, each of us know that the document contains critical information which is vital to the health of children and adults with Rett syndrome in the UK and so the urge to get it out to families has been strong and driving since the first moment we decided together that this was something we needed to do.
The other thing which has kept us busy at Reverse Rett for the last couple of weeks is of course, the GW Cannabidiol trial for which Reverse Rett has been contracted to provide pre-screening, referral and travel and accommodation support services.
Since the trial was announced two weeks ago, we have conducted 11 pre-screening calls with families for the first trial site and answered many many enquiries.
If you have expressed interest in the trial but we have not contacted you yet, please be aware that the London trial sites are not yet open so whilst we have an active list of people who have expressed interest, we are not yet setting up calls for the families of these patients. We will be in touch as soon as we have more information to share.
And so, to North Berwick. We look forward to seeing so many old friends tomorrow, runners, volunteers and friends from both the Cobb and Bird Labs at Edinburgh University who always come out to support the run in a variety of ways.
There will be families there who we have known for years and others we are meeting for the first time, whose children have been diagnosed since the last time we were here.
Whenever we are coming together for an event like this, raising vital research funds to improve the lives and future of people with Rett Syndrome, we are thinking of our own children at home. We are thinking of yours too, wherever you are; hoping and working for better days for all of us.
Co-Founder & Executive Director, Reverse Rett