Whilst we have a broad group of members of varying ages, I cannot not mention that school holidays are upon us! It is not always an easy time for our members with children or for people affected with Sturge Weber Syndrome. For some, they are happy to be in the sanctuary of home and for others they miss the routine. If you are struggling, you are not alone.
AGM
As you are you know the AGM date has moved. What I completely forgot when we announced the new date was that I am running the Great North Run on Sunday 11th September. I am not run ready! I will do it whether I need to run/walk or run it all. Keep your eyes peeled for my Just Giving page! Having said this it means that the AGM will need to go ahead on Saturday, not Sunday. I apologise for the oversight! The AGM will now run on Saturday, 10th September at 10am. Please accept my apology for this error.
Northern Day
We have been busy in July planning a Northern Away Day. This is open to all charity members, and it is especially convenient for members who live in Scotland and the north of England. If you missed our Family Weekend in Coventry, this is an ideal opportunity to catch up with other people with Sturge Weber Syndrome. It will be held in Newcastle on 10th October 2022. The Northern Away Day will consist of meeting up and sharing experiences, there will be entertainers for children and food provided. We are still working on the finer details but will be showing talks from GOSH and hopefully will be able to have another speaker in person.
Friends of Sturge Weber UK
Last month we launched our Friends of Sturge Weber campaign. We have received two more applications for new volunteers for the charity. Do you have time that you can spare to help the charity? Being a volunteer is a great way to support the Trustees in running the charity, it widens your knowledge and experience, and it looks great on your CV too! You decide what spare time you have to give. We have nearly 300 members who I am sure have amazing skill sets which could help the charity. If you are interested in becoming a volunteer, please email support@sturgeweber.org.uk.
Grant application for iPad
Is your child with Sturge Weber Syndrome aged 3 to 18 and visually impaired? If you have not applied for assistive technology in the last 3 years you may be able to apply to Guide Dogs for a free iPad. Follow the link:
Carer’s Assessment
Did you know … Parent carers of disabled children in the UK have a right to ask for their family’s needs to be assessed by social services through a Needs Assessment and a Carer’s Assessment.
Here are some key differences between the two — but you’ll find a lot more information in the links below, including template letters that you can use to ask for either assessment.
Needs assessments: contact.org.uk/needs-assessments
Carer’s Assessments: contact.org.uk/carers-assessments
Parent guide (England): contact.org.uk/la-services-guide
Challenging a refusal to assess: contact.org.uk/making-a-complaint-about-services
Make a Difference Grant
My favourite post on the members only Facebook page this month was Nikita Matthews’ post on Harper’s development thanks to the Make a Difference Grant. Here is a snippet of Nikita’s comments:-
Today our beautiful little girl officially swam by herself
This was the same girl who a year ago could not hold herself and had no core strength
The sturge weber journey is tough but these moments make my heart explode
Thank you to make a different grant for giving Harper this opportunity
Sturge Weber UK thank you xxx
The Make a Difference Grant is still open. Please do not be too proud to apply to the charity for support should you and your family need it. The application form is available on the website https://www.sturgeweber.org.uk/sturge-weber-uk-make-a…/
Shop
As you are aware the Charity has a new logo. The shop has been restocked. Look at the website to see what new stock is now available. https://www.sturgeweber-store.org.uk. Watch out for our limited-edition items due to land.
Fundraising
Are you up for the challenge and able to raise vital funds for Sturge Weber UK?
What can you do?
- Cycle
- Climb
- Run
- Walk
- Swim
- Skydive
- Trek
- Triathlon
- Pub quiz
- Cake Sale
- Brave the Shave
- Sorry/Swear Jar
- Game night
- Overseas challenge
- Dress down or fancy-dress day at school, community group or workplace
- Sweepstake
- Personal challenge
- Tournament
- Ball
- Donate in memory of someone
- Set up a monthly donation
Does your company want to sponsor an event, conference or awareness day? Do you have a team of staff who you can engage through fundraising and volunteering? Contact us at support@sturgeweber.org.uk to discuss further how we can work together.
Thank you
We would like to thank fundraisers this month who are:
Joseph McCusker
Tyler Dunnett for his Family Fun day
Graham Davidson and John Walker for their 3 peak challenge event
Tracey Jackson for a sponsored walk by Lynne Webb & Sharon Deighton Zack
Mrs J Wallace who has donated on behalf of Norah Powell.
Simon Davis for agreeing to do a sky dive on our behalf https://www.justgiving.com/fundraising/Simon-Davis50
We hope that Louise Barrell is doing well with her training for the London Marathon in October. Donations on her Enthuse page have grown rapidly recently and we grateful for the huge task she has challenged herself to https://tcslondonmarathon.enthuse.com/…/louise-barrell…