Marie’s November & December 2022 Update
Happy New Year to all our members. I hope you have all had a happy and healthy Christmas and New Year and are looking forward to 2023.
The Trustees have had a few weeks off to spend time with our loved ones and are looking forward to a busy few months moving forward planning the Family Weekend, having a face to face meeting in January which will include Trustee training and much more. We are all looking forward to growing the charity in 2023 and hope to increase engagement with our members and welcome any feedback you may wish to give whether that be positive or negative.
The last two months seem to have been a term of sickness in my house with all three kids seeming to tag team being sent home from school and Annie having her operation to close the whole in her ear drum. I am hoping that January will see a return of my children back to school and time for me to get back to work and charity work.
It can be a difficult time to negotiate December with all routine in school and college being thrown out of the window, the house looking different with Christmas decorations, chocolate for breakfast and then if you foolishly (my view) thought that introducing “The Elf on the Shelf” into your home, which brough with it in my house usual at 5.30am “I’ve not moved the Elf”, was a good idea having that to deal with too. I hope that December has passed as well as it could, and you have all got through with happy memories.
Cold Weather and Cost of Living Crisis
November and December brought some very cold weather for us all. I hope you all managed to stay warm during these cold months and have managed to cover the exceptionally high heating bills we have all had. The help for families differs depending on where you live, whether you receive benefits or not, and lots of other things such as whether you use gas or heating oil. The list goes on and on. If you are struggling and need help with where you can go for grants have a look at these websites :-
https://www.gov.uk/guidance/cost-of-living-payment
https://www.citizensadvice.org.uk/debt-and-money/get-help-with-the-cost-of-living/
https://www.turn2us.org.uk/Your-Situation/Cost-of-Living
Priority Service Register – Extra help from energy and water companies
You can sign up to a Priority Service Register (PSR) to receive extra help from your energy or water company, and it is completely free to sign up.
You will be eligible if you have reached your State Pension age, are disabled or have a long-term medical condition, are recovering from an injury, have a hearing or sight condition, are pregnant or have children under 5 or have a mental health condition.
If you are registered information is given in an accessible format, you are notified of planned power cuts or water issues, you can get bills sent to a family member or carer of your choosing, you get priority support in an emergency and help with giving your meter readings.
You will need to sign up to each of your supplying companies. You can get more information at https://www.ofgem.gov.uk/inormation-consumers/energy-advicehouseholds/getting-extra-help-priority-services-register
Family Fund 18-24 year old grants
The Family Fund have a Help with Family Fund 18-24 year old grant application open. This is on a first come first served basis until the fund is used up. The criteria for this is :-
- You are the main parent/carer of a disabled or seriously ill young adult who lives at home with you.
- You have not received a Your Opportunity grant in the last 12 months
- You have lived in the UK for the last 6 months
- You have a low household income or if you received Universal Credit, Working Tax Credit, Child Tax Credit etc.
- The young person will need to have high support needs in three or more of the eligibility criteria shown on the website.
If you are successful you can use this to apply for :-
- Digital equipment – such as laptops, tablets, software to help with coursework, gaming
- Clubs and activities – membership fees, sports training, support with season tickets, materials for a hobby
- Musical instrument – contribution towards a musical instrument
- Sports equipment – kit or uniforms, specialist equipment, such as a specialist sport or lightweight wheelchair, wheelchair maintenance
- Transport – railcard, train tickets, bus passes
- Day trip – cinema, theatre, concert tickets or meals out
- Education – equipment and tools for a training or vocational course, books, uniform, stationery for college, conference or study weekends
- Driving ambitions – contributions for a provisional licence including licence cost, learning materials, theory test, initial lessons
- Bedroom furniture – assistance with beds and bedding, televisions
- White goods – kitchen items such as a fridge, freezer, cooker, washing machine etc. to help with independence
Find more information at https://www.familyfund.org.uk/help-for-18-24-year-olds
Cuppa and Catch up – Under 5’s
The Zoom Cuppa and Catch up for Under 5’s went well in November. It was the best we have had so far with a good number of parent’s joining. It lasted just short of 3 hours so we got lots of ground covered and lots of issues that new families face brought to the trustees attention. We are planning more for 2023 and propose these to be :-
- Friday 21st January at 1pm
- Monday 24th April at 10am
- Wednesday 6th July at 1pm
- Friday 13th October at 10am.
Details will follow and be emailed to members.
Cuppa and Catch Up – all
The days for Cuppa and Catch Up for all we are proposing are :-
- Sunday 14th February at 10am
- Sunday 21st March at 10am
- Sunday 17th September at 10am
- Sunday 10th December at 10am
Family Weekend 2023
The feedback we received from the last family weekend was that our members would like it to become a yearly event. We have agreed that the next Family Weekend will be Friday 5th May to Monday 8th May 2023.
The weekend will run on a similar informal basis as last year and we will be offering members to stay for 3 nights, 2 nights or 1 night. If an adult member has Sturge Weber Syndrome they will be invited to join us for Free. The pricing for none Sturge Weber affected members will remain the same as last year and children will attend for free. A booking form and information pack will be sent during January.
Whilst we appreciate that this coincides with King’s Coronation, we will ensure that the kids club have activities to cover this, and a wide screen will be available for anyone who wishes to watch this.
AGM
We will run the AGM at the Family Weekend on Sunday 7th May at 11am. We appreciate that not all members will be in attendance at the Family Weekend, and we will arrange for any members wishing to join over Zoom to be given an opportunity to do so. The AGM pack will be sent to members with an opportunity to raise any questions before the AGM. If you will not be in attendance and wish for an AGM zoom code, please email support@sturgeweber.org.uk.
Friends of Sturge Weber UK/Trustees
As we have previously updated, we now have 3 new volunteers which means that the total volunteers the charity has is 5.
The number of Trustees is 3 which means that there is a considerable amount of work that falls upon us. We need more Trustees! Are you interested or do you have a family member or friend who would strengthen the Trustee team. We particularly require support in marketing/social media and fundraising. If you have skills that can help us whether as a Trustee or Volunteer, please do get in touch at support@sturgeweber.org.uk.
Grant applications
More Make a Difference Grant applications have been released since our last update. If you need help from the charity please send your application to support@sturgeweber.org.uk.
The Make a Difference Grant application policy has been updated. A copy of the policy and application form are attached. The main point that has been updated is that we will only accept two grant applications in a 12-month period.
Thank you
We would like to thank fundraisers for November and December who were:
Geosynthetics
Louise Barrell
Lord Babosa
Ruth Card in memory of Joan Rothwell
Jeanette Tinsley
Sarah Leake
Maria Dillon
Denise Inman