I hope you are all well and safe. November has passed by quickly again and I can’t believe that we are soon to be in 2022. The last year has certainly gone very quickly.
Manchester
November is the month that the Sturge Weber Mum’s respite weekend is held in Manchester. Nicola Colenso organises this weekend and I can honestly say it is one that is always first to be added when I buy a new calendar.
This year’s attendance was reduced but what a good time was had by all who could make it. We met on the Friday and went to the Flight Club for a bottomless brunch and darts! Saturday was filled with shopping during the day and a lovely Italian meal followed by The Blue Kitchen until late which was really good fun. We finished off on Sunday morning with a lazy breakfast in the hotel and catch up where lots of laughter was had. The invitation is extended to all Sturge Weber Mums and the weekend is in your control, so if you fancy spending the day in the Spa you can do just that. The date of next year’s weekend is Friday 18th to Sunday 20th November. I will post details after January when we start booking hotel rooms. It would be lovely to have more mum’s join us next year.
A Dad’s weekend would be a fabulous thing to have in the diary too. Maybe this is something we could try and set up at the Family Weekend?
Logo and Rebranding
The Trustees are still working with the graphic designer on the logo and hope that we can finalise this in the next week and announce it to you as members.
Make a Difference Grant
As advised last month our first Make a Difference Grant has been released. We welcome more grant applications. Dealing with Sturge Weber Syndrome is tough on the individual who has the syndrome, carers, parents, and siblings. If the charity can help in any way by making a difference in your life, please let us know. Examples of what this grant is there to do are:
• buy equipment
• pay for therapy
• pay for counselling should someone in your family need it.
Christmas Cards and reduced stock
Mel Jones won the Christmas card competition, and we now have in stock the new cards in the shop https://www.sturgeweber-store.org.uk.
You will see that we have a sale on some of the shop items. Head on over and grab yourself a bargain.
Thoughts
I would like to send love and support to Louise Stimpson and Isaac after he has been diagnosed with Myasthenia Gravis this month. Hopefully now the team at GOSH have a diagnosis, support and help for Isaac getting back to the cheeky chap we all know, and love will happen soon.
Yasmin Murray has recently had to have another shunt fitted for her Glaucoma. I should have sent her a get well soon in last month’s update. Sorry I missed this, I hope you are starting to feel better, and the shunt is doing its job and reducing the pressures in your eye.
One of my favourite posts of Facebook during November was seeing Harper Matthews take her first steps after having a hemispherectomy in January. This is an awesome achievement, well done Harper.
I hope you have a happy and healthy December and enjoy spending time with your loved ones over the Christmas period.