EDITS Study

Incredible!

The small TSA team is all feeling a bit teary-eyed in our virtual offices today. We simply don't have the words to describe how massively proud and thankful we are to everyone in at the London Marathon 2023. Instead, we'll let some of our amazing runners put it in their own words:

"What an incredible day. The blood, sweat and tears (literally!) were all worth it for that feeling of crossing the finishing line. I don’t think I can ever sum up to anyone just how that felt" - Hayley, first-time London Marathon runner.

"I finished yesterday in 03:58:25 and was greeted by the little girl who it was all in aid of. It was a brilliant day and I have memories that will last a lifetime." - Sam, uncle to Avery with TSC.

"I loved the whole experience and the support from the public is incredible. An amazing experience I will never forget!" - James, longstanding TSA supporter.

The jawdropping efforts of all of our runners, and the kindness of donors, has resulted in over £20,000 and rising to improve lives in the TSC community. This gives us real breathing space, and allows us to keep going. As long as we're here, we'll continue to fight for everyone affected by TSC - these donations help give us the means to continue the battle.

Thank you to all of our runners: Claire Felstein, Chris King, Daniel Marks, Duncan Warner, Emily White, Hayley Grainger, James Black, James Harper, Lewis Bastin, Sam Cooke. You're amazing!

Just popping on to say a belated happy new year to all our EDiTS families and friends! We're just about settled back into the swing of things here and we hope you've all enjoyed a well deserved break over the last few weeks.

Rowan and Zayna will be hitting the road again soon and we can't wait to see more of you lovely lot!

Quick reminder that we're still recruiting families of 3-5 year old with and without a diagnosis of Tuberous Sclerosis! Read below to find out more

We're inviting families of 3-5 year old children to take part in our research study investigating behaviour and development! Participation involves our lovely team visiting your home at a time to suit you, to complete some fun toy- and tablet-based activities. Families receive a small gift and voucher for their time.

You can find out more here: www.edits-study.org/preschool-phase

Feel free to ask me any questions 😊

Study email: [email protected]
Study mobile: 07880 394296

Tickets are now ✨FREE ✨ for the TSA Big Day in Manchester

Big Day 2022 is quickly approaching, with the TSC community joining together on Saturday 8 October at the Innside by Melia Manchester. Tickets for the event are now FREE - to get as many people as possible along to the day, and to also reflect the rise in cost of living.

Come along for a great day of talks, workshops and opportunities to connect with other people who are affected by TSC.

https://tuberous-sclerosis.org/get-involved/our-community-events/big-day/

We're inviting families of 3-5 year old children to take part in our research study investigating behaviour and development! Participation involves our lovely team visiting your home at a time to suit you, to complete some fun toy- and tablet-based activities. Families receive a small gift and voucher for their time.

You can find out more here: www.edits-study.org/preschool-phase

Feel free to ask me any questions 😊

Study email: [email protected]
Study mobile: 07880 394296

Read about what we've been up to recently, team updates, and a new research participation opportunity in the EDiTS Study Winter 2021 Newsletter! Click the link below to access it:

https://bit.ly/EDiTS_Winter_2021_Newsletter

Happy holidays and all the best for 2022 from the EDiTS Study Team! ❄️ ⛄️

EDiTS Study Check out this document designed by Chlöe Sanders.

Dear EDiTS Families,

We hope you and your family are well and staying safe in these unprecedented times. We are contacting you as we have been busy creating a new project! The study is being led by us here at King’s College London and involves a UK-wide team of researchers working with children with rare disorders.

We would like to invite you to take part in a new online research study investigating the impact of Covid-19 on the mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders (CoIN study).

The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders. Your responses will be rapidly fed back to Genetic Alliance UK and other support organisations, and used to identify and provide better ways of supporting you both now and in the future.

The study involves completing an online survey that will ask about your family, general health and wellbeing, your child’s behaviour and specific impacts of the Covid-19 pandemic. You will then be asked to complete shorter surveys once per month while social isolation is taking place.

You can read more information and take part in the study here: https://www.coinstudy.co.uk/

Follow us on FB and Twitter!
FB: https://www.facebook.com/coinstudykcl/
Twitter: https://twitter.com/coinstudykcl

You are under no obligation to take part in the CoIN study and your participation is entirely voluntary. Deciding not to participate will not affect your participation in other research studies or disadvantage you in any way. If you do decide to take part, you can withdraw at any time, without giving a reason.

Home Welcome to the CoIN Study. We are investigating the impact of the Covid-19 pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders.

We hope you and your families are keeping well during this extraordinary time. For comprehensive information on coronavirus for families living with TSC, please see the TSA website which is being updated regularly:

https://tuberous-sclerosis.org/news-coronavirus-tsc/

We have paused our in-person assessments according to government advice. We hope this is only a temporary measure and we will see you all again soon. The EDiTS team are working from home, so please get in touch if you have any questions during this time.

In happier news, we are pleased to let you know that Charlotte is back from maternity leave, with her brand new research assistant (working hard in the photo)! Watch this space for news on exciting future plans.

Thank you for your continued support of the EDiTS Study! Stay safe and well 🙂

We're delighted to be awarded this funding from the Hospital Saturday Fund with the Tuberous Sclerosis Association to continue seeing our baby and toddler scientists! We look forward to sharing more news with you soon!

A huge thank you to The Hospital Saturday Fund’s Chief Executive Paul Jackson, who visited the TSA’s offices today to hand over a incredibly generous grant towards the early development in tuberous sclerosis(EDiTS) research study!