Zooming success

We had another really good Zoom test meeting at the weekend. We’re going to run one more test (on 27 June) and then we are ready for our AGM on 4 July!


Latest Newslink now live


The latest newslink magazine has been published. This article is our biggest one to date, including: A tribute to our former chair David Pearce and his generous bequest, our Chair’s column with further details on Coronavirus, new awards for the group, the newly formed committees, and a call for help.

New LinkedIn page


Great news! We are getting a presence on LinkedIn for the HSP Support Group. This is another avenue to make us more visible and to share news.

Zoom to the rescue


Today the trustees held their first on-line Zoom meeting. Having done a test with Zoom and Skype we decided that Zoom had better quality and it was easier to set up meetings in advance. The meeting worked really well, and because we didn’t have to travel to the same place it didn’t take all day or incur any expenses, but we did miss the opportunity to share a beer.

Coronavirus statement


There has been much uncertainty around the level of risk which people with HSP might have with coronavirus. Our Chair wrote a letter to members to explain our position both in respect of meetings and giving relevant extracts from the Government advice.


A parent’s perspective of complicated HSP

At the 2018 AGM (my first), I had the chance to meet so many other parents who care for children with HSP, as well as adults who contend with the condition themselves.