News
The Noonan Syndrome Families Day and Activities Weekend scheduled to take place from 3rd to 5th April has been postponed following the escalating issues arising from the spread of the coronavirus. Our primary concern is the health of our Noonan families and we would not want to expose any of our members to the extra risk involved in attending a “get together” which although important is not strictly necessary. The Trustees of the charity held a conference call at the end of last week and the trustees were unanimous in deciding that the weekend should be postponed to a date some way forward when there would be a better chance of it going ahead successfully and in an environment of reduced risk to family health. We were also conscious of the increasing demands on our Medical Advisory Group and the increasing likelihood that many of them would not be able to attend in April.
We realise this will be a disappointment to many families but are sure you will all agree that this is the most sensible decision to take now in the face of an uncertain public health situation going forward.
We have had further conversations with Whitemoor Lakes Activity Centre where the event was due to take place and we are pleased to say that we have managed to reschedule the Families Weekend to the weekend of Friday 26 March to Sunday 28 March 2021. While there may be some small changes from the programme sent out to you for this year, we are confident that we will again receive good support from our Medical Advisory Group and be able to offer an interesting and informative medical programme as well as a great choice of activities at Whitemoor Lakes for our children. We will of course keep a close eye on the coronavirus situation as 2020 progresses to ensure that it is as safe as possible to go ahead in March 2021 – lets all hope for that!
The charity will of course be willing to refund money paid by families for 2020 accommodation costs on request. This will be by cheque to the named lead person on the registration form.
However, we do hope that families will consider supporting the charity by leaving their accommodation payments with us, both to reduce the administrative burden of making refunds and to help the charity’s cash flow. This will also guarantee your place and your accommodation at the 2021 rescheduled event. This is entirely voluntary of course and up to each individual family.
It is of course vital that we are sure that everyone who was due to attend next month has received and understood this message. Those people and families should have received an email about this but if not, please email families@noonansyndrome.org.uk to confirm that you are aware of the postponement.
