Marie’s June, July & August Update 2023

I hope all our members are having a wonderful summer and all happy, healthy, and are well. Here’s an update into what the Trustees have been doing during June, July, and August: –

Family Weekend
As previously reported the Trustees have received requests from members that the Family Weekend run yearly. One of the tasks set for the Trustees from our mentor Nicola Colenso was that we regularly review a topic we call “You said We Did”, so in line with this we have booked next year’s Family Weekend for the weekend of 24th May to 27th May 2024 at the Hilton Doubletree in Coventry.

Booking forms for this will be available shortly on the website www.sturgeweber.org.uk.

AGM
The AGM will be run during the Family Weekend, and we put you on notice that this will be held on Sunday 26th May 2024. An AGM pack will be sent to you two weeks before the AGM and an invitation for those who are not going to be in attendance will be given the option of joining via Zoom.

Trustee Meetings
The Trustees had a meeting 16th July 2023. Discussion were had about the engagement work that was done at the Family Weekend and the tagline that we need. This was launched over email and Facebook (Members only) Page. It has been agreed that the matters moving forward we will be working on as a matter of priority was: –

• Updating Leaflets
• Updating Charity Commission with the Accounts for 2022
• Releasing the restricted £15000 via the Charity Commission
• Applying for Grants (hopefully Children in Need)
• Advertise and support the Dad’s Welsh 3000 Challenge

The next meeting of Trustees is planned for 26th September 2023 where we will discuss a review of policies. The next full Trustee meeting is 15th October 2023. If there are any matters, you wish to raise with the Trustees please let us have these at support@sturgeweber.org.uk

Tagline and Mission Statement

The suggested Taglines are: –

• Support Awareness Strength
• Family Hope Strength
• Empowerment Strength Support
• Support Strength Knowledge
• Support Knowledge Hope
• Hope Support Strength

A Microsoft Form has been emailed to all members to vote on and a poll added to the members only Facebook page. Details of the winning tagline will follow.

Suggestions for the mission statement received so far are: –

• We hold strong together.
• Strength within holds us together.
• Together comes a strength to guide us through.
• Together we are a strength to guide us through our remarkable journey.
• Knowledge leads to empowerment. Family leads to support and understanding. Together we have unity.
• Providing strength and support by spreading knowledge and awareness, giving hope and empowerment to our Sturge Weber Family
• A support network to empower our Sturge Weber Family
• You’re never alone with a support network from the Sturge Weber Family
• Support and knowledge equals power
• Together we share knowledge strength and understanding to empower our Sturge Weber family and spread awareness.

Please let us have your suggestions of the mission statement at support@sturgeweber.org.uk by 30th September 2023.

Friends of Sturge Weber UK/Trustees

We are pleased to announce that we have received a volunteer application form. 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

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-Difference application- form-1.pdf and needs to be sent to support@sturgeweber.org.uk.

Dad’s Welsh 3000 Challenge

We need your help!

The charity is currently run solely by donation of fundraisers and whilst we are currently looking into grants, the cost of putting on the Family Weekend yearly and grants means that what money we currently have will soon deplete.

Whilst there is currently £77047 in the charity’s accounts, £15000 of these are restricted and allocated production of a book. We are currently trying to arrange for these to be unrestricted and working with the Charity Commission to do this.

This only leaves a balance of £62047 for spending. So far this year we have raised £8242 from fundraising, donation, gift aid and the family weekend. Please note we have not included in this figure money raised in campaigns and fundraising events run in 2022 which were not paid into the bank until 2023, nor any money received from the Dad’s Walk paid into the bank from Just Giving prior to the event.

The cost of the family weekend yearly after receipts in from members attending is £28411. We have a balance of £3460 put aside for Grant applications. As you can see within the next few years if we don’t secure Grant applications and further fundraising from members, we will not be able to run the family weekend, start new projects (as members are suggesting) and support grants.

What can you as members do to help support us increase funds? Go to https://www.sturgeweber.org.uk/fundraising-event-ideas/ and see the ideas we have on our website. Do you have skills at writing grant applications and can volunteer to help in this area? Do you have skills in marketing and social media, and can you volunteer to help in this area?

As you are aware group of 4 dads have decided that they would like to do the Welsh 3000 challenge in October 2023 on our behalf to raise money, awareness of the condition and promote men’s mental health. To date they have already raised over £7000. We need you to get behind this campaign.

Could you share with you connects a link to their just giving page? Could you share this on your social media platforms? Do you have business contacts that you could share this with who may support this challenge?

Click here to view the Just Giving page

Would you be willing to support this challenge by donating? This is not for the faint hearted and is a huge effort by 4 of our dads. Lets get together and support them supporting us so we can keep supporting our members.

A special thank you to the following companies: –

• Sealskinz for donating 4 pairs of gloves.
• 1000 mile for donating 5 pairs of socks, and 5 blister packs.
• Trekmates/Sprayway/Gosystems/Oboz/Wempire/Adventure Foods for donating 5 waterproof jackets.
• Leki for loaning 5 sets of Leki Khumbu Walking Poles
• High Five for donating energy gels, bars, and tables
• Morrisons for donating water and other supplies.

Sturge Weber Awareness Day 27th June 2023

It was lovely to read our members share stories on Sturge Weber Awareness Day. Well done Nicola Colenso for your tireless work sharing awareness internationally.

Lucy Channel 4 Documentary

As you are aware Annie’s school friend Lucy won Channel 4’s Piano and was asked to play at the King’s Coronation. She is supported greatly by the Amber Trust. Channel 4 has been filming a documentary on Lucy and her teacher which will be aired shortly. Annie is to feature on this documentary. If nothing else, it will make a good watch. Once I am aware of when it is to be shown I will let you know. I am not nervous about Annie participating in this at all! I promise ha ha!

Guide Dogs – Isaac’s new dog

Isaac has recently received a guide dog from Guide Dogs. The family are taking part in a TV documentary about their journey. Watch this space for when this will be aired. Read the article here – View Article

Well Done and get well soon

• Well done Lily who took her first steps unaided in June.
• Rosie from her article in the Mail raising awareness for Sturge Weber Syndrome.
• Kez for featuring in this month’s Mobility Lifestyle magazine.
• Nikita for working her socks off and securing a EHCP for Harper.
• Get well soon Liam Pearson, Amelie, Seren, Ian, Harper, and Jacob.

Thank you

• Frances Philips held a charity fundraising event in July and raised £270.00 on our behalf.
• Thank you, Frances, for doing this on our behalf.
• Thank you to Antonia for her donation in May.
• Thank you also to the anonymous donations received via Just Giving.

Well done on GCSE/A levels

To all our members congratulations on any exam results you may have received over the summer. We are proud of you all. Keep being the best version of you you can be !

September Good Lucks

Good luck to all our members who are starting nursery, school or moving school or college. We are proud of you all.

Finally, an introduction and message for Steve Waters

All about me
Hello everyone; for those who don’t know me, I’m Steve Waters, a 58- year-old Southampton fan who has been married twice, has 3 amazing kids, 2 fantastic grandchildren (“No! surely not!” I hear you say…), 1
beautiful wife, and a clumsy, but very handsome dog.

I’m currently a self-employed web designer and digital marketeer. I’ve run my own business for 15 years after spending 25 years in Retail Management working in DIY and Office Supplies. Working for yourself
means you need to be organised, disciplined, patient and have a sense of humour. All qualities that I believe I possess.

The freedom of being self-employed gives both my wife, Sarah, and I the flexibility to deal with any issues that arise from having a son with Sturge Weber. Callum is 11 years old and has had his fair share of problems over the years. Both he and his big sister Lily are my driving force; like all parents you just want the best for your kids, and I work hard to ensure that I provide for my family. You can only hope that the sacrifices you make when running your own business pay off later in life.

In my downtime, this old punk still loves music, both live and recorded and I’m currently teaching myself to be a DJ via the magic of YouTube. I love reading, films, playing the PS5 with Callum, watching Southampton, and photography.

What will I in my new role as Digital / IT Trustee bring to the party…

I took over the old Sturge Weber website from Roger and Jenny, it was hastily re-built, and I’ve been updating the site as when required over the past few years. In addition, I built an on-line store that allows the charity to sell branded merchandise. Recently I have been working on a new site which will be launched very soon. This new site will bring many of the paper forms we currently use online, such as the Family Weekend application form. The website will be more user friendly, easier to browse, and have more features about our members.

We also plan to produce our own Podcasts, look at the feasibility of developing a Sturge Weber App and we’ll be introducing tips for parents about ensuring their child(s) safety online; making sure you understand what they are doing, with online gaming such as Roblox and Fortnite, video consumption with YouTube and TikTok, talking online with Snapchat and WhatsApp and other general safety, like search histories, etc. I’ll also be looking at helping the charity with all things digital and IT related. Streamlining the way we work – bringing more software ideas to the table that will help futureproof the charity so that
when people leave and others join, there is a robust structure in place that does not fall over due to any disruption in personnel.

We’ll also be designing and producing new literature, both hard and digital copies, so that we can help spread awareness of Sturge Weber Syndrome and the charity, in all the most needed places, i.e., hospitals, clinics, etc.

I’m really excited about what we can all achieve and really looking forward to where we take this charity over the next few years.

If anyone has an ideas or suggestions, feel free to contact me at support@sturgeweber.org.uk