Marie’s October Update
Firstly, apologies for the delay in this update being released. I am not sure where this year has gone, and the last few months seem to be passing in a blink of an eye. Last month we announced the exciting news that the Make a Difference Grant was launched. We have received 1 application which has been successful. Please go to the website https://www.sturgeweber.org.uk/sturge-weber-uk-make-a-differencefund/ to download an application form.
Logo and Rebranding
The trustees worked with a graphic designer on suggesting a new logo. A statement was released as to why the trustees felt that it would benefit the charity to rebrand and get a new logo. The draft new logos led to lively discussions, and we were really pleased with the interaction we received from you as members. I would like to apologies again for the questionnaire I originally sent out not working. We have established that Microsoft Forms will not work properly with my Mac which is why we came across the issue that Antonia can share the forms which can be accessed by you all, but I cannot. It was a steep learning curve, but all is not lost as we now know the reason for why.
We have taken your comments on board and in fact the vote was split 50/50 between keeping the existing logo and using one of the new designs. We are still working on this and will release further information shortly.
Christmas Cards
The winner of the Christmas Card competition was Melanie Jones. We are currently in the process of getting these printed for sale in the shop so watch this space. You can pre-order by emailing support@sturgeweber.org.uk.
Mosaic Disorder Conference
As you know from the article emailed and published on Facebook Antonia and I attended the Mosaic Disorder Conference. It was well run, and the research and effort being put into how science can help Sturge Weber is really encouraging. As said once the paper has been published on the scientists’ findings, we will forward this on to you.
SUDEP Awareness Day and Mental Health Awareness Day
During October we raised awareness for SUDEP on social media and mental health awareness. We are aware of the risks of SUDEP to our members and the mental health pressures both our members who have Sturge Weber Syndrome can have and their families. We are here to support you as best we can and to sign post you to other organisations and charities who may be able to help you. We plan on launching a Wellness Grant in January and will forward details of this soon.
Family Weekend – 27-30th May 2022
Planning is underway for the next family weekend. Thank you to all the members that completed the questionnaire. Thank you also to members who have posted on the members only group questions/suggestions and emailed these through too. We hope to send out booking forms in January together with a plan of how the weekend is to be run and changes to the old format. Please keep your suggestions coming we really appreciate them and are guided by them.
Final thoughts
I would like to wish Alfie a speedy recovery as he is currently in hospital after an onset of seizures. I would like to welcome the new members who have joined the charity this month. Well, done to Sophie for getting her poem published and to Caity for her first day of work placement. Special thank you to Christina Slack for her recent fundraising and Beautyzone for their Halloween raffle.