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New look, new feel…
We have been regularly posting on our social media and sending out ad hoc emails from time to time, but it’s been quite a while since we sent out a general newsletter about what’s happening at Ring20… so here it is!
This issue is packed with updates on what has been going on behind the scenes at Ring20, from supporting families, to research updates, to supporting our fabulous fundraisers – just because you haven’t heard from us in a while, it doesn’t mean that we have stopped working hard for you.
Take a moment and catch-up on all the news…(and we hope you like our new look?)
What's new?
In the last few months we have upgraded our internal systems and are finalising updates to a new central database, enabling us to stay in contact with you more easily. Look out for emails coming soon where we will be asking you to add, update or confirm your existing contact details and preferences.
This is really important as we appear to be missing information from quite a few of our member families and we don’t want to lose contact with you.
Keeping your information up-to-date will ensure we only contact you in the right place, at the right time.
Ring20 leaflets – now translated in multiple languages
Although we are based in the UK, we have a global reach and that means we have families that join us who do not normally communicate in English. Our Ring20 Champions have been helping to bridge the communication gap, by translating some of our leaflets into 7 different languages.
DID YOU KNOW? our website supports auto-translation in 9 languages other than English.
Simply select the language of your choice from the drop-down list in the top right-hand corner of the screen on the home page of our website.
Ring20 maps are back!
You asked and now we have delivered!
Based on information from our database, we can now plot all known cases of r(20) on to our PUBLIC map (as in the image shown above) and keep this updated on a regular basis. There are now 162 individuals we can plot on the map – which is pretty awesome, considering the latest medical literature refers to around 200 cases of r(20) syndrome reported worldwide (a significant under-estimation in our view) – that’s >80% coverage.
Each pin on the map indicates a person with r(20) who has made contact with us (based on the last region, county, country provided). All pins are anonymised. Zoom in on the map on our website and see how many individuals there are near you…
Making Connections, Supporting Families
Our Ring20 maps are vital for:
- demonstrating our reach – to healthcare professionals, researchers and funders
- (and highlighting where we need to raise awareness)
- connecting families – to relieve isolation
If you haven’t provided us with your address, you won’t be on the PUBLIC map…and we won’t have sent you one of our new Welcome Packs either, so you are really missing out on lots of useful information and the support services we have to offer!
The Ring20 PRIVATE map is now LIVE too. The PRIVATE map is available to anyone who would like to share their email address to connect with other r(20) families, for example in the same country, time zone, or with other families who speak the same language. The PRIVATE map (as the name suggests) can only be viewed by families who consent to share contact information with each other.)
We will be sharing details of how you can access the PRIVATE map soon.
RESEARCH
Back in February, we brought you the first in what we hope will become a series of webinars on topics of interest to our Ring20 families around the world. Dr Ken Myers from Canada presented a great kick-off webinar, where he explained what we know about r(20) syndrome, as well as explaining his work on publishing a case series on VNS use in r(20) syndrome. Many of you contributed your experiences of VNS use to Dr Myers and Ariane Lajoie and the forthcoming publication is expected to be available soon in Epilepsia. We hope to be able to share a link with you in future eNews.
SAVE THE DATE…
Monday, 8th September 2025, starting at 19:00 UK time (BST)
We will be hosting a general Research update webinar to bring you up-to-date on what’s happening in research into r(20) syndrome. Make sure you tune in to hear and ask questions about:
Our plans are for the Ring20 Research Fund
Progress on the Ring20 Patient Impact Report Study
New Task Forces for our International Scientific Board on: Diagnosis, and Treatments
Patient recruitment for genomic investigation studies in the UK and the USA
Link to sign-up to the webinar will be sent nearer the time.
Fundraisers
We’ve had fantastic support from our fundraisers in the last few months. We would like to take a moment to thank each and every one of them…here’s some highlights
Celebrating our Fabulous Fundraisers!
Steve’s ironman challenge
Smashing his initial goal of £10,000, Steve has raised an amazing £15,000 for Ring20. With Lily as your motivation we can’t thank you enough for undertaking this gruelling event, Steve and huge thanks to all your supporters/sponsors at Listers.
Carl’s triathlon challenge
Together with work colleagues, Carl (picture here with daughter Lily) took on a local triathlon event. Carl loves bike riding, but adding a swim and a run added to the challenge. Thanks for pushing yourselves and raising £2,000 for Ring20.
Louise’s Everest challenge
Louise, one of our newer UK member families chose to take on the Everest Base Camp challenge, raising a whopping £2,000 to be shared between Big Moose (mental health charity) and Ring20 – 2 charities close to her heart.
Emilie’s Brussels challenge
Stephane and Marie’s daughter, Emilie took part in the 20km of Brussels challenge, with Emilie being pushed around the long course in her buggy by the super strong, Jean-Paul Storm.
Their Facebook fundraiser totalled over £1,200. Wow!
We are always happy for anyone to take on a challenge for us at Ring20…or fundraise in any other way that suits you. Take a look at some of the past challenge events on our website, or contact us for details and support with any fundraising you would like to take on. Our small, but friendly team are here to support you every step of the way.
We hope you’ve enjoyed reading this newsletter…if you have any feedback for us we always love to hear from you, so we can bring you the news you want to hear.
Until next time…
Allison and all the team at Ring20!
#FoundMyTribe
