Hello everyone, what a few months we have had and 2024 is fast approaching. Staying with the theme from the engagement exercise, held at the last family weekend ‘You said … we did’ the trustees have been very busy behind the scenes.
Trustee Meetings
Trustees held a full trustee meeting on 18th October 2023 during which we have been busy working to progress ‘the ever growing’ to do list.
Updating Leaflets:
A core group of Trustees have been sourcing relevant and up to date information to be written in our new information leaflets and posters. These leaflets will be for families and professionals. As part of completing this we need your help!
Would you like to appear in our leaflets, on the new website and on social media? If so, we need your photographs for this. We are looking for individual and family photos.
Please send them into support@sturgeweber.org.uk
Tagline and Mission Statement
OUR Tagline.
‘Strength, Awareness and Support’
Our tag line winner was announced. Well done Shalu Khosla and thank you to all those that participated in this.
OUR Mission statement.
“Sturge Weber UK inspires to promote research and share knowledge to empower individuals diagnosed with Sturge Weber Syndrome and their families and carers. Giving strength to create a supportive, inclusive and caring community whilst raising both public and professional awareness”.
Thank you to all those that shared ideas for the charity mission statement. We hope that you agree that this new mission statement encompasses all that you want the charity to stand for.
Family Weekend
Save the date for next year’s family weekend has been sent out via email and shared on social media. As a reminder the event will be held on the weekend of 24th to 27th May 2024 at the Hilton Doubletree hotel in Coventry.
Steve has been working hard on a new booking form and this will soon be live on the website www.sturgeweber.org.uk. Keep your eyes peeled for the announcement that this is live.
The Trustees are in the process of looking to secure face to face speakers for the event.
New website
Steve is working on building the charity a new website. The aim is to have all information, signposting, forms etc on the site. The plan is also to have a member only section.
Online store
New items have been launched in our online store. Each item will be embossed with our charity logo. We have not ordered bulk stock so will be ordering on demand, so deliveries may take a little longer, however check them out. There is a range of colours available in each item. We have plan to increase these items in the new year and if you have ideas as to what you would like to see in the store, please let us know.
Social media
We have also been focusing on engagement and awareness. As you may have noticed we have tried to increase our position on social media this being on Facebook, Twitter and Instagram. You may have also noticed Marie has been doing some live posts. We hope to continue to do these from time to time to share what we have been doing.
We ask again – we need your help! As you know you can find anything online. If you find something that you think would be interesting or useful to our members or the charity, please share. Quoting Marie “We don’t know what we don’t know”.
Friends of Sturge Weber UK
We are excited to announce we have a new volunteer, Kerrie Hiscock. Kerrie is going to be working alongside Marie (SWUK Chair) and Nicola (Mentor of SWUK) looking at fundraising ideas and grants for our charity. You may have seen one of many suggestions Kerrie has on social media ‘Don’t Send a Card’. Thank you, Kerrie, we all are looking forward to getting to know you.
We also have some more very exciting news. We have a new ‘Charity Champion’ aka Danny Grimes. Danny has previously been a Friend of Sturge Weber UK and is a huge advocate for the charity and raising awareness of the syndrome. Danny has recently been working on a pod cast with Marie and Steve – watch this space.
Thank you, Danny, for your commitment, we look forward to continuing to work with you in your new role.
Do you have time to volunteer for the charity? 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
SWUK ‘Make a Difference’ Grant applications gave out £6268.95 from Jan 2023 – Nov 2023. On a positive note, we have been proud to have been able to approve these grants for individuals and their families. On a not so positive note, if we are to sustain this grant scheme, we need to be able to fund it.
We propose ‘Active in April’ to be used to fund the ‘Make a Difference’ Scheme. We will be running Active in April again in 2024 and your support with fundraising would be very much appreciated. What this space for more information.
We would also be grateful to those that have received a grant sharing with us how receiving the grant has made a difference, thank you.
Finally, we plan to explore options on match funding and crowdfunding applications for individuals and families, so we can approve more smaller grants for members and continue to support the larger grants. We will share more information in the new year.
Cuppa and a Catch up
Thank you to those that joined us on the 15th November. It was lovely to see some old and new faces.
We will be sending out dates for more cuppa and catch ups for 2024 soon and hope you can make it.
Away day with the SWaNS Team at GOSH
On Thursday 28th September 2023, the Trustees were invited to join the SWaNS team at the Sight and Sound Building at Great Ormond Street Hospital. Read a full report on how this went by visiting www.sturgeweber.org.uk
Awareness raised by members
Massive shout out to everyone on the amount of awareness raised over the last 3 months.
Bella – for coming up with the idea of making sea glass ghosts and raising money for our charity
Lily and her parents Alice and Dan – for continuing to share her story and featured in an article in the Evesham Journal and Birmingham Children’s Hospital.
Jacob – for taking part in a presentation at school about GOSH. Jacob talked about how he visits there with his sister Seren.
Halle – for taking into school a donation of cakes from Karis Cake Creations along with a copy of ‘What’s that on your face’ and raising £50.
Hannah – sharing her story in Changing Faces for #antibullyingweek.
What’s that on your face’ book – we held an event to raise awareness in our communities by offering a free book (only paying postage) for members to share at schools etc. This event was well supported. If you would like a copy of the book to share in your local services please let us know. Copies of the book were also supplied to the team at GOSH when we attended in September.
Chevonne and Graham Davidson and Nottingham Wildcats Basketball Club – for thinking of us when sponsoring this teams’ new kits. SWUK logo is printed on the team kits.
SWS Dads – Richard, Rick, Nathan and Nathan took part in the Welsh 3000’s Challenge on the 7th of October 2023.
Their aim was to raise money, much needed awareness of the syndrome and promote men’s mental health … tick, tick, tick … We are proud to announce our SWS Dads completed the challenge in 20 hours and 57 minutes. A tough decision was made to retire Rick and Richard at the end of the second leg due to injury and time restraints to the whole team.
They have raised £12,350 for our charity and alongside that the awareness raised was phenomenal.
Massive thank you to Adam and Jordan for providing support over the 24hrs and to Gavin who took photographs over leg 2. Shout out to Liam for also walking the final leg of the challenge.
The dads received donations of kit items from:
Bridgedale
Sprayway
Extremities
Silva
NU Visions
1000Mile socks
Gearaid
Hikewear
St Johns Ambulance
Sealskinz
Leki
High5
Terra-nova
Ordnance Survey
Logo-co
Morrisons
Artisan Adventure
Mountain Ambling
As well as our logo featuring on many of these companies’ social media posts, articles about the event and SWS featured in the:
The Chronicle,
BBC Newcastle Radio,
Trail Magazine,
JCB Magazine
Charity Today
Please share your stories with us and continue to support our cause in raising awareness.
Pumpkin Competition – Thank you to all that shared your pumpkin designs for our Pumpkin Competition. Well done Josh and Harper on winning this.
Is this something you would like to participate more in? We are interested in hearing your ideas.
Fundraising
Massive thank you to:
• Dad’s Welsh 3000 Challenge – Wow what can we say. Another massive thank you to the 4 dads that took part in this Richard, Rick, Nathan and Nathan.
• Kate, Olivia and Stevie Skiplorne – For your fundraiser via Just Giving.
• Chris Cookson – Wedding donation via Just Giving.
• Phillipa Hemsworth – Wedding donation via Just Giving
• Jeanette Tinsley and residents at Mill Spring Court. – For the collection you held for Sturge Weber UK.
• Mrs L Cavalier in memory of Joe Greenwood – Annie’s great grandad.
Easy Fundraising
You may have noticed the social media posts or emails mentioning Easy Fundraising. It is a free and easy way to raise donations for Sturge Weber UK while shopping. You can download an app, still collect your usual points and get your discounts but also Easy Fundraising gives a donation to the charity each time you shop. With Christmas around the corner … please consider us and have ago.
https://www.easyfundraising.org.uk/causes/sturge-weber-uk/?searchSessionId=494748c2-cff4-447b-968e-ce18f6206e39
Don’t Send Me A Card
As mentioned earlier check out Don’t send me a card. The donation you make for a card to be sent comes to Sturge Weber UK.
https://www.dontsendmeacard.com/ecards/charities/sturge-weber-uk
If anyone has an ideas or suggestions, feel free to contact us at support@sturgeweber.org.uk
Message from Marie
As you can see from the above the work undertaken by members as well as Trustees in the last three months has been exceptional. We really listened at the Family Weekend and are eager to deliver on the You said We did which has now been added to our Trustees Meetings Agenda.
Whilst there is lots of the “you said we did” that we need to deliver I hope you agree that this is a positive start. Over the coming weeks we will be applying for some grants towards the family weekend so watch this space to see whether we are successful. Let’s keep continuing to work together to share knowledge and empowering our community.
