25th April
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.
The main topics included discussing how we ought to use the David Pearce bequest, how we can raise the groups profile to neurologists and other professionals, the AGM, and agreeing the terms of reference for the first four committees.
9th May
The group held a set of Zoom test meetings to help members who have not used it before to see if they can, and to test the water for running a digital AGM. The meetings were a great success and we had 15 members throughout the sessions. Following the tests we decided that a digital AGM is viable.
16th May
As part of our membership of EuroHSP we took part in a Zoom meeting for EuroHSP, with nine participants from seven different HSP groups across Europe. It was interesting to hear how coronavirus is affecting each country.
Topics included a summary of the recent ECRD online meeting, work at the ERN (European Reference Network) and the need to get a patient journey summary, and what types of projects/websites we might to support/contribute to. A new Prospax study is mentioned, covering both HSP and Ataxia to draw together many patient networks develop a model of disease progression and look for biomarkers.
23rd May
A second set of Zoom test meetings were held to allow more members to try out this technology. These were successful, with 12 members taking part over all. We’re hoping enough members dial into the AGM so that we are quorate for business.