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05/07/2019

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

In preparation for the implementation of the UK Cannabidiol trial, we have welcomed two new members of staff to Reverse Rett this week, Rashida and Ewelina

Rashida has joined Reverse Rett as Finance Officer. Since Reverse Rett started providing travel and accommodation support for UK clinical trials for Rett in 2017, the number of financial transactions we make at Reverse Rett has risen sharply. This does not mean we are spending more money. For both the Sarizotan and Cannabidiol trials, the pharma companies sponsoring each trial have made special arrangements with Reverse Rett to financially support patients and families participating in the trials, so that there is no financial burden either to families or to the charity. However, it does mean more paperwork.

For the Cannabidiol trial, there are three trial sites instead of one, which means that our workload will increase further as the year progresses. 

This new trial has also placed an increasing demand on our Patient Registry Coordinator, Wesley, who manages the registry and works in house on all design at Reverse Rett and who has also been in charge of all Reverse Rett admin since joining the team two years ago. Wesley is therefore relieved that Ewelina has now joined us as Office Admin/Clinical Trial Co-ordinator. Ewelina will focus on the Cannabidiol trial and Vincent, Dad to Hannah, who has been working hourly to support families on the Sarizotan trial over the last year, will continue to provide support for that study.

One of our goals at Reverse Rett is to ensure that we are reaching out to UK families of people with Rett Syndrome of a wide range of cultural and socio-economic backgrounds, so that we can make sure all patients are registered, so that families are informed and able to access emerging treatments for their family member as soon as these are available. 

It is also important that families have access to the latest health care information and research findings in order to keep their family member with Rett Syndrome as safe and healthy as possible.

Ewelina, Rashida and Vincent speak Polish, Urdu, Bengali and German respectively and are all happy to help facilitate communication between the Reverse Rett team and families where needed, so if this is you, please do get in touch.

Speaking of the Cannabidiol trial, Andy and I went over to Alder Hey Children’s Hospital on Wednesday to meet up with Research Nurse/Clinical Trial Co-ordinator, Dianne Lea, Dr Ram Kumar and Dr Anil Israni. It was great to have the opportunity to discuss plans for the trial and how we can help, as well as being able to share useful information we have gained from our experience with the Sarizotan trial.

The team were able to show us around the Clincial Research Facility at Alder Hey too, which is brand new and well equipped for caring for patients with Rett Syndrome. The CRF is beautifully decorated, with TVs everywhere and their own play therapist and internal pharmacy.

The site has one more inspection to go before they are able to screen the first patients. If you have had a pre screening with Reverse Rett and are waiting for the trial site to call you please bear with us (and them). At the moment this is the only trial site we are recruiting for and screenings will be staggered over the coming months.

Anyone who follows the news will know that Cannabinoids are a topical issue at the moment. At Reverse Rett, we have been working to share information about the impending UK Cannabidiol trial for Rett with the media because despite the many difficult stories in the news about patients not being able to access medical grade Cannabinoids, we do have a positive story to share.

As we are working to ensure that as many UK  patients as possible are identified and registered, we need to capitalise on any opportunity to tell the general public about Rett Syndrome, the potential for treatment and the work we are doing. To this end, on Wednesday afternoon, we had a Sky News film crew in the office. Stay tuned to Sky News this weekend and you might catch a glimpse of us as well as of a lovely family of a little girl with Rett who volunteered to be interviewed for the piece.

In other news, our application for this year’s Big Give Christmas Challenge has gone in. This will be our tenth Christmas Challenge and we are looking forward to the day as always. We’ve also been working with an a brilliant marketing company who are helping us pro bono to develop a brand new campaign for the autumn and on Thursday, Reverse Rett Chairman, John Sharpe, spent the morning with Professor Santosh and Dr J Singh at King’s to discuss the team’s plans for patients with Rett in the coming year.

Typically at Reverse Rett we have seasons when the charity is very busy and periods where things go quieter, especially immediately after Christmas and just as the summer sets in. Usually, once the late spring events are out of the way, things calm down somewhat. That has not happened this year, either in January or now. Some of us (me) are flagging but it’s good when things are so busy and alive. It means things are happening and things happening means change for people with Rett Syndrome. That’s why we do what we do. Thank you for helping us.

Rachael Stevenson

Co-founder, Executive Director

Reverse Rett