DLA Workshops for Professionals

Guide to claiming disability living allowanceAs part of Cerebra’s programme of information workshops we have developed a Disability Living Allowance workshop for professionals. This is a full-day event (10am -4pm) and aims to give good basic information about DLA, as well as looking in more detail at the two components and how they are awarded.

The bulk of the workshop is spent giving attendees the skills, in conjunction with Cerebra’s DLA Guide, to be able to help parents to complete the claim for, and case studies are used to re-inforce learning. Finally, we look at how to ask for re-assessment of DLA and how to challenge decisions, as well as a very brief look at related benefits.

Our extremely popular DLA Guide goes through each question on the DLA form, giving explanations of what they mean and tips on how to answer them. It also gives advice about how to appeal if you’re unhappy with the decision.

For further information or to book a workshop, contact David Williams at DavidW@cerebra.org.uk.

Caped Crusaders Unite for the Superhero Tri!

Last year, we entered a team of brave superheroes in the very first Superhero Triathlon. The event was a huge success and so this year the Super Hero Series is back and better than ever.

Founded by Super Paralympian Sophie Warner, it’s “the UK’s one and only disability sports series for the Everyday Superhero!”

Cerebra is proud to announce we are once again supporting this epic triathlon as charity friends and will be  Team Cerebra!

This year’s event is taking place on the 18th of August 2018 at Dorney Lake, Windsor. Participants can team up, grab a side kick or fly solo to compete in any of the four unique challenges.

Rhys and Anthony, who took part in the triathlon for us last year will once again be rising to the challenge! We’re looking for eager super heroes who want to join them on team Cerebra. The only requirement is that one person on your team must have a disability and you must have your own equipment to take part in the triathlon.

If you would like to find out any further information about the event or how you can join our team contact mariak@cerebra.org.uk.

Direct Payments Survey

In response to enquiries from our members our Legal Entitlements And Problem-solving (LEAP) team are carrying out an electronic survey to find out what families of disabled children think about the direct payment system.

If you’re already using, will be using or used to use direct payments we would be very grateful if you’d consider taking part in the survey.

You can find the survey here together with more information about it. It should take no more than 10-12 minutes to complete and the responses are totally anonymous. Thanks in advance for helping with this important work.

Samuel is our Star Volunteer!

Samuel and Angel

Samuel and Angel

In 2017 we welcomed Samuel Turner to team Cerebra as a volunteer and Samuel, his family and friend Angel Jolly have done us proud!

They have held bake sales to raise both money and vital awareness to Cerebra and have even visited HQ so they could meet Cerebra staff.

Always eager to spread the word about Cerebra, Samuel recently spoke about us in an interview with his local radio station, Gateway 97.8 FM. He has also been doing a lot of fundraising in the run up to Christmas, along with Angel.

Samuel is also extremely creative and has made a number of videos to promote how he feels about Cerebra, including the special Christmas one which you can see below.

To date, Samuel has raised a fantastic £425 for Cerebra but has also been a positive representative for us, receiving praise from everyone he meets whilst in the community.

One lady that met Samuel while he was fundraising told us: “Whilst I was having my lunch with my little girl who is 3 I got chatting to a lovely man called Sam and his friend Angel. He interacted with my daughter and was such a pleasure to chat with.

He told me a lot about your charity and told me about why he got involved. He is an absolute treasure to your charity and explained everything about your charity even quoting your website address. This young man needs to be praised as a lovely person and I wanted you to know you are lucky to have him working for your charity!”

We do feel extremely lucky to have him on board. Thank you for everything you have done this year Samuel!

James’ trike ride is a winner!

James on his trike

James on his trike

Nine year old James Miles is our latest fundraising Superhero! James raised an incredible £512 for Cerebra so that we can support other children who are living with cerebral palsy.

James spent the summer holidays training for his challenge and, at the end of September, set off on a two mile ride on his specially adapted trike. James showed true determination to complete the ride, which was a huge achievement for him.

His mum Kathryn said “We were overcome by how generous everyone was at the end of last year to enable James to have this fantastic trike and we thank you all from the bottom of our hearts, he has loved riding it. But now it is James’ turn to give something back so we are hoping you can help James raise money for Cerebra”.

Gareth receives a cheque from James

Gareth Owens from Cerebra recently paid a visit to a special school assembly where he met James and his mum and received a cheque for a whopping £512.

Thank you James – your support means that we can help more families who have children with a brain condition to discover a better life together.

 

Cerebra Innovation Centre’s Rocket Shelf Finds a New Home

Eve and her rocket shelf

Eve and her rocket shelf

The Cerebra Innovation Centre recently designed these rocket shelves. This cool piece of equipment was originally designed for a young boy, to help his mum who has to transport numerous medical machines whilst transferring him from room to room.

They were styled to suit a child’s bedroom and be more like a child’s toy rather than looking dull and medical. They feature 3 shelves, space to store an oxygen bottle, a 4 socket extension lead so all the machines are plugged in and you only need one wall socket, and 4 omnidirectional wheels so it can be moved around effortlessly. Additionally, there is ample space to wind wires and store bits and bobs.

Since the team at the Innovation Centre first started making the shelves, there have been many happy children and parents that have benefited from the design, including Eve. She and Dad Steven are currently testing out the rocket shelves and sent us these gorgeous pictures.

The rocket shelf

The rocket shelf

Steven said: “It’s amazing THANK you so much I will send more pictures as we go on amazing.”

Heidi and Tim also had a rocket shelf for their little one Charlotte, and we were so pleased when Heidi sent us in this lovely feedback.

Heidi says “The shelving unit is working out great for us and easily stores all her machinery and medical items, fitting well into the bedroom space.

The fact it is on wheels is great as we have to change her ventilators weekly which means needing easy access to the back of the machines which the wheels and open backing provides for”

Thank you to everyone for the wonderful feedback on our rocket shelves.

 

If our Innovation Centre can help you and your family just get in touch on cic@cerebra.org.uk.

New books in our library

We’ve got lots of great new books on a range of topics available to borrow now from our library.

Autism including Asperger Syndrome

AV6731 – Autism and Me (book & dvd)
Rory Hoy

L6732 – A Parents’ ABC of the Autism Spectrum
By Stephen Heydt
2017

L6728 – Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million
By Vikky Turner
2016

Communication

L6729 – Language for Thinking
By Stephen Parsons
2005

Education Teaching and Learning

L6733 – Provison Mapping and the SEND Code of Practice: making it work in primary secondary and special schools
By Anne Massey
2016

Growing Up

L6734 – When Young People With Intellectual Disabilities and Autism Hit Puberty: a parents’ Q&A guide to health sexuality and relationships
By Freddy Jackson
2016

Law and Rights

L6735 – Special Needs and Legal Entitlement: the essential guide to getting out of the maze
By Melinda Nettleton
2017

Personal Care including Feeding, Diet and Toilet Training

L6736 – What To Do About Smearing: a practical guide for parents and caregivers of people with autism developmental and intellectual disabilities
By Kate E Reynolds
2017

Sleep

L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children
By Gillian Cowdell
2007

Special Needs in General

L6737 – Achieving Successful Transitions for Young People with Disabilities: a practical guide
By Jill Hughes
2015

Therapies and Treatments including Medication

L6738 – Music Therapy for Multisensory and Body Awareness in Children and Adults with Severe to Profound Multiple Disabilities
By Roberta S Adler
2017

Children’s Books

Autism and Aspergers

C0273 – Through the Eyes of Me
Non-fiction
Age 5 and under

C0275 – Creating Autism Champions: autism awareness training for Key Stage 1 and 2
Non-fiction
Age 8 – 12

Feelings

C0276 – It’s Raining and I’m Okay: a calming story to help children relax when they go out and about
Fiction
Age 5 and under

If you’d like to borrow any of these books, completely free of charge, contact our librarian on janetp@cerebra.org.uk. To find out more about the library check out our library page.

We Become Charity Partner of The Conquest

Conquest

Conquest

We’re very excited to announce that we’ve become charity partners of the Conquest.

The Conquest is a brand new seriously bouncy inflatable obstacle course where you can run, jump and bounce your way around their six massive inflatables.

We’ve tried out the course for ourselves and it’s a lot of fun!

The Conquest have a number of events lined up around the country for 2018 but the first event is taking place on 10th December at Carmarthen Showground. It will be getting eager Conquerors into the festive spirit by asking them to come dressed as Santa – there’s even a prize for the best dressed Santa!

As the charity partner of the Conquest, proceeds will be coming to Cerebra – something we’re extremely excited about!

You can sign up to take part in the Conquest’s December event through their website. See you there!

Dustin to Run London Marathon for Cerebra and his Buddy

Dustin

Dustin is running the London Marathon in April

We’re very excited to welcome Dustin Erhardt on to team Cerebra for the London Marathon 2018!

Dustin’s story of how he came to decide to run for Cerebra is a unique and inspiring one.

Dustin lives in North Dakota in the USA and first took up running when he joined a group called I Run 4 – who match runners with buddies who may not be able to run themselves because of physical or developmental reasons.

He was paired with a little boy from the UK called Samuel who has Autism and he has been the inspiration for him taking part in a number of marathons and in April, Dustin is planning on making the journey across the Atlantic to meet his buddy and run the prestigious London Marathon!

Dustin's buddy Samuel

Dustin’s buddy Samuel

Dustin told us: “For the past two years I have had the honour of being matched with an amazing little boy named Samuel. In this time he has become like a nephew to me and we have exchanged pictures, videos, medals, encouragement and so much more. In May this past year I ran my first marathon with him with me every step.  In training every mile that got tough I knew he was right there with me encouraging me to keep going.  And now in April 2018 I have been given the amazing opportunity to travel to London and meet Samuel and run the London Marathon with him there cheering me on in person thanks to Cerebra as they have granted me a charity entry into the heavily sought-after London Marathon.  Together we can bring awareness and support for all of those that live with Autism.

My buddy Samuel’s little sister Phoebe is also a member of the IRun4 group and she has a a genetic condition called xp11.4 duplication. She has a small hippocampus on the left side of the brain that is damaged and which they believe is causing her epilepsy. She suffers from this along with autism, delayed speech and a hearing condition called hyperacusis. So for me, supporting a charity like Cerebra is not only important for all children it is very near and dear to my “Family” (we have completely adopted each other as family). I run because I can. When I get tired, I remember those who can’t run , what they’d give to have this simple gift I take for granted, and I run harder for them.  I know they would do the same for me.”

Dustin is fundraising through his Virgin Money Giving Page and has already raised nearly £1,000! You can donate through this and help him reach his £2,000 target.

The London Marathon is taking place on 22nd April.