Posted on 3rd April 2020 by Sandie


Firstly we hope that you are staying safe during this extremely difficult time. I know a lot of you are staying in contact during this time via the various social media outlets where you can share experiences and practical advice. As a charity we do not have the resources or knowledge to offer medical advice to individuals or families; please do keep a close eye on the UK government and NHS announcements/sites to keep up to date with a fast changing situation.

The Trustees, Charity Manager and volunteers will of course be carrying on business as far as is possible and our focus will be primarily on keeping the charity’s finances healthy, continuing with our plan to start at least one new research project under Michael Patton’s leadership and as the year progresses and hopefully improves, we will be planning the Families weekend now rescheduled for Friday 26 March to Sunday 28 March 2021. We appreciate that these are tough times but hope that our regular givers and fundraisers will continue to give us good support.

This weekend is of course when we should have been holding our 2020 Families Day and Activities Weekend – ironically the weather looks to be set fair as well so we’re sure it would have been as successful as ever. One thing we always start the Families Day itself with, is the Annual General Meeting of the charity.  Due to the changed circumstances, the Trustees feel that it would be impossible to hold this at present and are therefore proposing to postpone this until the next Families Day on the 27th March next year. Our members should have received an email about this.

Please stay safe in these trying times. It may not always feel like it, but it is temporary and it will come to an end. Until then it is important that, wherever we can, we continue to support each other.

Ian and the Trustees and Peter