As you know a new board of trustees was formed in January. We are in the process of auditing the Charity to ensuring that we are working effectively as a team and in the member’s best interest. As mentioned in last month’s update we have been upskilling ourselves by undertaking courses to strengthen our knowledge of safeguarding and GDPR.
When the Charity was handed over there was some policies in place, but the new board felt that these needed to be reviewed and additional policies agreeing. The Trustees had previously met each month to work through a few policies and approve them. During May we decided that we would bite the bullet and met on 3 separate occasions via Zoom to bottom the policies. I would like to thank Carolyn, Lisa, Antonia, Lynn and Lauren for taking the time to read and suggest amendments to the policies, as well as then spend over 8 hours in meetings approving these. The policies will soon be added to the website so watch out for these.
There is now only two more to go through. We are waiting on further information regarding some reserved funds from 20 years ago, before we can approve the Financial Management Policy and the Reserves Policy. I would like to use this as an opportunity to ask you as our members how you want the Charity money using. We welcome your suggestions on projects that you feel we should be supporting or changes to the Charity you would like to see.
I will be in London during the beginning of June as Annie is having brain surgery on 3rd June at Great Ormond Street Hospital. If you have any issues or concerns, please contact Carolyn, Lisa, Lynn, Antonia or Lauren who will be happy to help you in my absence.
I am very much looking forward to writing June’s update as hopefully I will be able to share with you the success of Annie’s operation and hopefully the start of a new chapter in her life.
Thank you for all the lovely messages of support, deliveries of gifts and love we have received in the last week. Sturge Weber Syndrome is many different things to our loved ones, but I think you will join me in saying that the Sturge Weber Family/Community we meet during our journeys is absolutely amazing.
Marie