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06/09/2019

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

August is our quietest month of the year. With many of our supporters being parents of a child with Rett Syndrome it’s a challenging time to say the least. The Summer holidays are now over and this week the office resumed to being a hub of activity which is just how we like it.

The 6th European Conference hosted by Rett Syndrome Finland will be taking place in Tampere, Finland at the end of this month.These conferences are always an excellent opportunity for patient groups, clinicians, researchers and industry partners to come together, hear about the latest in Rett Syndrome research and clinical practise and draw up plans for the future.

At Reverse Rett, we have made so many great connections at these conferences and cemented long standing professional partnerships which are critical to the work we do. At this conference, there will also be a poster session providing the opportunity for patient groups across Europe to share their activities and latest goings on in their organisation. This week, Wesley and Rachael have been preparing our submission for the poster session which is now complete.

We’ve also taken a large delivery of new t-shirts which have all needed to be unpacked, sorted and put away ahead of our busiest fundraising season.

We are often asked whether people can buy our t-shirts and the answer to this is no. Selling t-shirts is not very profitable but it is time and energy-consuming and so it does not make practical sense for us to sell them from the office.

Why buy one anyway, when you can get one for free by setting up a Just Giving page for Reverse Rett? If you don’t have any particular challenge or fundraising event that you would like to do, why not just write your child’s story and tell readers why raising funds for research is important for you? You can also set up a Just Giving page (or facebook donate-link) for your birthday, in honour of someone else’s, for weddings, birth-weight pools, or anything else you can think of and we’ll send you a t-shirt and other fundraising materials as needed

Fingers crossed that the new tops are spotted LIVE on BBC this weekend as Jo, Alli and Tim will be the first supporters to wear them in the Great North Run. They are all running in honour of Lysbeth who will be out on the course with her family to cheer them on. Keep an eye out for Rettman AKA Ben Stewart too who is running for his daughter, Penny with his collection bucket in hand

Another cool thing we have taken delivery of this week are good boxes. These are small digital devices, which are basically the modern day version of the old ceramic style dog charity collection boxes that you could pat on the head and pop your loose change in after going in a shop. With good boxes, you just tap your bank card on the device to donate from £3 up to £30 before or after you make your card payment. We are looking forward to getting these devices out to shops, pubs etc and having them available at events to help people make donations more easily. If you’d be interested in bringing a good box to an establishment near you, please let us know and we’ll see what we can do.

This coming weekend, Reverse Rett London Marathon 2019 participant David Rouse, will be taking part in not one, not two, not three but FOUR Tough Mudder events. For the final event on Sunday, David is due to be joined by fellow 2019 Marathon runner,  Reverse Rett co-founder, Andy Stevenson, as well as Reverse Rett Ambassador Gary Chambers and long time Reverse Rett supporter and friend James Griffiths.

Andy has been preparing by doing in both his back and knee during training and has been walking around with a bag of frozen peas for most of the week which has somehow turned him into Tin Man. He will be seen working from a standing desk for the foreseeable future without a speck of mud on him by orders of the Management.

Last year’s accounts (2018) have also been published this week and have been sent to the Charity Commission and Office of Scottish Charity Regulators (OSCR) as required. The full 2018 Annual Report is available on our website now along with all our Annual Reports from 2012 to date. Our 2018 impact infographic will be available to share very soon.

It’s a good thing having to put these reports together because it is always rewarding to look back on what we have achieved over the last year and to be reminded of the impact we’ve made for children and adults who are living with Rett Syndrome and all the difficulties it brings, every day. Sometimes, in the hustle of getting everything done here, we can lose sight of what we are able to accomplish. One fundraising event; check, onto the next thing. An impact report is a good way to press pause and acknowledge what’s been achieved before pressing on again and always at high speed.

During the summer, we have done a great deal of work in preparation for the GW Pharma Cannabidiol trial which Reverse Rett is supporting with pre-screening, referral and logistical arrangements for patients and families. The first patient is due  to attend their initial screening visit next week.

As always, our thoughts are with this patient and family who have volunteered, like so many others, to be screened for this trial. We look forward to our continued work with participating families and to making as many successful referrals as we can in order to support this important work for all children and adults with Rett.

Next weeks’ weekly blog will be coming to you from Edinburgh where we are holding the second Reverse Rett Discovery Day on X date. With presentations from Sir Professor Adrian Bird, Dr Stuart Cobb and Professor Santosh, it looks to be a tremendously informative meeting.

We look forward to seeing lots of you there!