Marie’s March April and May Update 2023
As the title suggests it’s been a while since I last updated our members as to what has been going on. There are a few reasons why I have been unable to update you all but firstly, let me apologise for the delay.
Organising the Family Weekend takes a considerable amount of effort and time from the Trustees and took up much of March and April. I am pleased to announce that this year’s Family Weekend was a great success. I will go into more detail about this further into this update.
Active in April
Active in April was another success this year raising £1767.00 for our charity. Lots of members participated in this again, although discussions have been had as to whether people would be more likely to join in if we ran it in May, as the Easter holidays takes 2 weeks out of April and may be putting some families off.
Let us know if next year if the event was moved to May, it would be preferred by you. A poll will be set up on the members only Facebook group, if you are not a member of this you can register your vote by emailing support@sturgeweber.org.uk
Health
I feel I need to explain a little about the delay in updating our members. I have been unwell since the Family Weekend. As well as being a mum to three children, a wife to Nathan, running 3 businesses, managing Annie’s hospital appointments and surgeries I work part time and running the house. I love my role in the charity and volunteer any spare time I have to our charity.
Organising the Family Weekend is not a small job. There is a lot of work behind the scenes that members do not need to see but is equally important for the charity that it is done. This includes risk assessing the weekend and planning every detail so that our members get the best experiences from the charity money we spend on the weekend.
On the drive home I started to feel unwell. After a week of putting off going to the doctors I had no alternative but to go. The result was that my blood pressure was sky high despite being on blood pressure tablets and my body was in fight or flight mode and was producing too much adrenaline which meant that if I stood up my heart rate shot up to 140 bpm and I went faint.
Long story short after years of dealing with Annie, seizures, brain surgeries, arguing with medical professionals, arguing with education specialists and spinning many plates despite my best efforts to keep going my body told me I needed to stop.
After a trip to A&E when we thought I was having a heart attack (thankfully I was not it was just an anxiety attack), the doctor told me that their advice for someone suffering anxiety was to remove the thing from their life that was causing it. Yes, I did laugh in his face as I don’t think anyone would have my husband and children and definitely know Annie would not cope without me. The reason I am sharing this with you all is because I am not ashamed that after 12 years of going through the rollercoaster that is Sturge Weber Syndrome my body said I needed to stop and start looking after myself.
For a change I listened to what I was told and took a step back from as much as I could do for a month in order to see if I could get a handle on my health. I am glad I did I am now back to fighting fit and have learnt a valuable lesson that I need to look after myself as well as everyone else.
I hope you all understand the reason for my time away from working for the charity, but I am now back. You can probably hear the other Trustees groaning that I will once again be bombarding them with questions and job lists.
It is okay to not be okay. It has taken me a hard lesson to learn this but if by sharing this with our members it allows one to say “I feel the same” it is not a waste of my time sharing. If you are struggling, we are here for you. My phone is always on for our members you are not alone.
Family Weekend
The Family Weekend was held at the Hilton DoubleTree Coventry the weekend of Friday 5th May to 8th May. We are pleased to announce that this was another huge success. I would like to thank Carolyn, Antonia, Nicola, Steve and Danny for all their hard work in helping plan and run the weekend.
The Friday was an informal start the weekend which allowed families to settle into the hotel and have a meal in the restaurant and then meet other families at leisure.
Saturday morning those who wanted to watch the King’s Coronation. We had lunch and welcomed all members to the weekend. On Saturday afternoon we ran an engagement session with the adult members, where the Trustees advised the work that has been done in the last 2 years and discussed where the members want the charity to go in the future. Members were asked to work in groups to help the Trustees in starting the work of agreeing a new Tagline and Mission Statement for the charity.
A huge thank you to Nicola Colenso who not only volunteers for our charity in mentoring all trustees but work alongside the Trustees in delivering this session and helping members take control of what they want the charity to look like moving forward. The charity would not be moving forward with the clarity it now has without the support and dedication of Nicola.
After the engagement session there was free time and we met for an evening meal where there was entertainment and a disco. A raffle was held thank you to all who donated gifts helped make this a success.
On Sunday we held the AGM and included members who were not in attendance who opted to join via Zoom.
We then listened to a pre-recorded talk by Rion Walsh who is a Neurological Physiatrist at GOSH.
There was then more free time where families were able to use the hotel facilities, or some opted to go to Coombe Park Abbey.
SOS Care were on hand over the weekend and ran a very successful activity club. The children who attended loved this and the feedback was that it was loved by all in attendance. Thanks again to Jayne Dainty and her staff at SOS Care for their support over the weekend.
Sunday evening followed a similar format to Saturday evening. Monday morning, we had a leisurely breakfast before we all said our goodbyes.
The shop was open over the course of the weekend and brought in sales of £1039.00. The raffle and auction brought in £863.50.
Thank you to all members who attended the Family Weekend. The next one is planned to take place 24th to 27th May 2024. Booking forms will be sent much earlier this year and will be done via the website. The reason for this is that it will save the charity postage and makes the booking process more streamline! Opening the bookings earlier will also give members more time to pay for their contribution towards the weekend.
A copy of the trustee presentation is attached with this update for those who weren’t in attendance. If you have any questions on this, please email support@sturgeweber.org.uk.
AGM
The AGM pack was emailed to all members a week before the AGM. The reason for this is that we believe members should be allowed time to read the documents before the AGM and raise any questions they may have on the paperwork. It also allows the AGM to run more smoothly.
The AGM was again a success. The next AGM will run on Sunday 26th May 2024 at 11.00am. Please add a note to your diary as even if you are not at the family weekend you will be invited to attend via Zoom.
A copy of the minutes of the AGM are attached for members.
I am really pleased to welcome Steve Waters to the team who was voted in at Digital/IT Trustee and Claire Trevor who was voted in as Engagement Trustee. The team is now 5 strong and we are still looking for a Fundraising Trustee to join us. Attached is a copy of the job description and we welcome applications for this role.
Trustee Meetings
Over the course of the last four months the Trustees have had many meetings for planning the Family Weekend and Make a Difference Grant application meetings and Policy Review meetings.
Going forward in the next few months we have planned, a policy review meeting a general trustee meeting over zoom, and we are planning to coordinate a face-to-face meeting which as I’m sure you can imagine does take a lot of planning around our work and family schedule! If there is anything you would like bought to the trustees’ attention and discussed at a meeting, please forward an email to support@sturgeweber.org.uk.
Feedback from the Family Weekend
The questionnaire replies were mainly positive with all apart from 3 responses on rooms all agreed all the areas we asked about were as good as or better than expected.
Some of the comments made have been added below:
Fantastic weekend, keep the weekend as a social event with speakers applicable to all, impressed with the effort put in, well organised, perfect split between presentation AGM and social time, Hotel too warm, lack of changing facilities, more games, face to face talks.
All feedback will be taken into consideration and shared with the hotel if appropriate for the planning of the Family Weekend in 2024
The winner of the Amazon Voucher for completing the feedback is Marc Divers.
Tagline and Mission Statement
When asked what the members wanted to the charity to stand for the following are some of the words that were said :-
- Inclusive
- Sharing
- Caring
- Listening
- Empowerment
- Hope
- Emotion
- Knowledge
- Journey
- Community
- Support
- Friends
- United Connections
- Awareness
- Future
- Positivity
- Unique
- Inspiring
- Family
- Strength
From these words the Trustees will now do a piece of work to create a tagline and mission statement for our charity. If you were not in attendance at the family weekend and have thoughts on this and want to add your view please email to support@sturgeweber.org.uk
When asked what members wanted the Trustees to work towards the following was said:-
- Leaflets to maternity wards
- Resource hubs
- Empowerment
- Update leaflets and information
- Interaction
- Marketing
- Growing Community – old and new members
- Relaunch charity
- Awareness day (promotion)
- Podcasts on website
- Presence on Instagram
- Address gaps between medical opinions and parents
- Research trials
- Website – information on transition and frameworks
- Accessibility
- Education on new research
- Prevent loneliness
- Inclusion
- Opportunities
- Hope
- Life long
- Connections
- Face to Face
- Awareness Globally – of charity and condition
- Driven by wants and needs of members
- Champion programs
- Networking
- Collaborations
- Local services don’t know specialists
- Shared experiences
- Sibling support and support day
- Education system and how to access
- Co-Diagnosis – Autism and ADHD
- Add Ireland to name to include all members
- School information pack
- Expand shop (i.e., phone holder)
- Safe environment
- Support hub for members
Again, if you were not in attendance at the family weekend and have thoughts on this and want to add your view, please email to support@sturgeweber.org.uk
As you can see from the list, we created there is lots of work to be done to provide our members with what they want from the charity. We need your help to do this. Is there an item above that you have knowledge of and can support the Trustees in a piece of work to help give the members what they want? Do you have experiences that you would like to share either via a social media post or article for the website.
Anything that you as a member can do to support the Trustees in any areas of work highlighted at the family weekend would be greatly received.
Friends of Sturge Weber UK/Trustees
This leads on nicely to this next area. Do you have time to volunteer for the charity?
As shown above there is a very large list of jobs and areas that our members want the charity to cover. You are members of our charity, and the charity is here for you.
Could you help the charity and other members by volunteering? If you would like to help and volunteer, please contact support@sturgeweber.org.uk.
Grant applications
We have received 2 more Make a Difference Grant applications. If you need help from the charity, the grant application form is available via the website
https://www.sturgeweber.org.uk/wp-content/uploads/2021/10/Make-a-Differenceapplication-form-1.pdf and needs to be sent to support@sturgeweber.org.uk.
Fundraising Evening hosted by Francis Philips
Francis Philips holding a charity fundraising event on 27th July 2023 at Folkestone Railway Club. It is a quiz night with a raffle. If you live locally and want to support Frances she would love you to join in.
Thank you.
We would like to thank fundraisers for March, April and May who were:
V J Cooke – Raffle Teddy
Active in April – Gemma Parson, Nikita Matthews, Rick Burns, Sarah Leake, Caity
Downs, Ian Williams, Kate Skiplorne, Antonia Cowan, Rebecca Chambers-Perola
Marathon – Jason Buckley
Raffle and Auction – Carolyn and Rick Burns
In Memory Of – Joan Rothwell