Stride with SADS UK to STOP SADS 2024

We are so pleased to let you know that SADS UK are holding another Stride to STOP SADS event this year on Sunday 19th May 2024, start time between 10am and 11am.

I thought you’d like to know that through the funds raised last year, we have been able to continue with our aims and objectives, including:

© Research into conditions that can cause SADS

© Support for families impacted by SADS

© Teaching CPR and defibrillator training in the community

© Installing Community Public Access Defibrillators

This year, the event has gained significant visibility on social media, thanks to our members support. Lots of people have said they would like to join Stride this year, so we thought we would like to invite you asap, as places are limited. We will be having a SADS family group photo at midday this year, Andrew is looking forward to taking a photo of all of us!

The SADS Team will be at the Gazebo near the Bandstand, eager to see you, as well as other SADS family supporters who come along on the day. As well as the walk, there’s plenty of time to relax and picnic, or choose your meal from the Serpentine Bar and Kitchen, the Colicci Serpentine Lido coffee house or one of the stalls around the lake – we’re spoilt for choice. You can even buy an ice cream if we have our usual beautiful weather, fingers crossed. We noticed that beer and wine went down quite well too and there will be plenty of free sweet goodies at the Gazebo.

Children and pets are welcome (as long as dogs are kept on leads) as the stroll around the Serpentine Lake is quite an easy walk.

I’ve attached the Stride Registration Form and look forward to hearing from you soon.

International Paediatric Brugada Registry

International Paediatric Brugada Registry: Survey of the Diagnostic approaches around the world

Presently, it is still debated how to correctly diagnose children with Brugada syndrome and how to assess their risk for dangerous arrhythmic events. Many different strategies exist around the world. To get an up-to-date picture of diagnostic strategies employed we sent out a survey to all participating centres of the International Paediatric Brugada Registry. The results are now available, showing, on the whole, an increasing consensus on certain diagnostic practises, such as the drug challenge testing, and a strong increase in family screening. Genetic testing is becoming increasingly important and is widely used. However, much has still to be learned, before we can interpret many of these results with certainty.

The International Paediatric Brugada Registry strives to provide data to fill this gap in knowledge. In 2024 the first big datasets will be ready for analysis.

SADS UK are pleased to have provided funding to support this vital research.

Bleed kits

There have been horrendous stories about stabbings in London and other cities; most recently a young boy Alfie Lewis sadly died after being stabbed in Leeds.

SADS UK have Bleed Kits which are available to go into the SADS UK cabinet, together with defibrillator. The Bleed Kit is also available separately for purchase, the bleed kits are for severe bleeding, as in a stabbing or traumatic accident causing chaotic bleeding.

Abolishing VAT on defibs

During September and Shoctober, the cardiac charity SADS UK is doubling down on our plea to Government to abolish VAT on defibrillators, enabling wider access to defibrillators and consequently saving more lives.    Contact SADS UK if you would be happy to speak with the media.  Supporting the BHTA - SADS UK, members and supporters are writing to their MPs urging their support for defibrillators to be VAT exempt.   SADS UK will provide a template letter and to help you get your story to your local MP.  Email:  [email protected]  

SADS virtual conference

Thanks to supporters who contacted SADS UK for a recording of the SADS Virtual Conference, UK and Europe 2023 

Virtual SADS Conference.  The link is here:- 

https://youtu.be/T5mSpwP782o 

Candle ceremony

When a child leaves this life early, the grief can be overwhelming on a level unequaled by any other human tragedy. Regardless of the child’s age, the journey through grief that parents, grandparents, and siblings must endure is a difficult road to travel.

Bringing grieving parents, grandparents, and siblings together by the simple lighting of a candle creates a moment of still and calm as we focus on the flame of the candle gently burning, creating a feeling of inner peace.

The experience of lighting a candle in remembrance of a child is a ritual that many find helpful as they focus on the beauty of a departed child’s spirit.