News – Children with Cancer UK newsletter

Raj was two and a half years old when he was diagnosed with a brain tumour. Over five years later, after enduring six operations, chemotherapy, proton beam therapy and immunotherapy, his mum, Suki was told Raj had three months left to live.

“Raj was oblivious. He was happy and smiling. The last few months were tough but we made some beautiful memories. On April 20th 2018, my beautiful baby boy died in my arms at home. I am so very proud of Raj. I miss him so much and life will always be empty without him. My only hopes are we find a cure someday so no other family has to face this reality. A cure really can’t wait.” Suki, Raj’s mum, February 2019.

Raj’s mum Suki tells their story here

Brain tumours kill more children than any other cancer. We’re working hard to raise awareness of this and, with your help, fund vital research to develop better treatments.

An announcement from our CEO, Dhivya O’Connor, confirms the need for research into the treatment of brain tumours and has pledged a further £1 million towards it.

Brain Tumour Research

When a child is diagnosed with a brain tumour, each family’s journey is different. Blake was given three weeks to live. Four years on, mum Llian tells their story.

Listen to her five short podcasts as she tells their story.

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March is National Essential Tremor Awareness Month

Having being diagnosed with a tremor a few years ago in both my hands, it is good to see the National Tremor Foundation (NTF) raising awareness of the various tremors and how they can affect people in their everyday lives. My tremors do show themselves more when stressed or for a period of minutes/hours, before normalizing. Do contact the charity for more information and/or advice.

ntf

The aim of the National Essential Tremor Awareness (NETA) month is to raise awareness of essential tremor by holding a series of events across the UK, including the National Tremor Foundation’s main event, Essential Tremor Awareness Day, at Holiday Inn, Sutton on 9 March.

Essential tremor is considered one of the most common neurological movement disorders and is estimated to be eight to 10 times more prevalent than Parkinson’s disease.  People exhibit a rhythmic trembling of the hands, head, legs, trunk and/or voice. It can afflict persons of any age, gender and race and in the vast majority of all cases it is inherited.  While more commonly noticed in older individuals, essential tremor can begin as early as birth.

National Essential Tremor Awareness month, was started by the International Essential Tremor Foundation (IETF), in the USA to raise awareness of essential tremor and has since been growing internationally from strength to strength.

Kevin Harfoot, NTF Chairman, said: “Over the last few years we have seen NETA month increasing in activity, particularly with the development of a stronger support group network in the UK. It’s great to see people getting together and raising awareness of essential tremor.”

We look forward to hearing more from the NTF and NETA month this March.

#Tremor2019

Follow the latest NETA month updates on Twitter #Tremor2019.

NETA 2019 events

Please note: contact each event specific organiser in case of change of details.

North West Tremor Support Group Meet-Up

6 March 2019 13:00 – 14:00
Linear Hotel, Lord Nelson Street, Liverpool L3 5QB
Contact: Tom and Joan Reader 0151 4753252

Southampton Shakers Meet-up (informal meeting)

8 March 2019 13:30 – 15:00Haskins Garden Centre West End (look for green spiral on table), Mansbridge Rd, West End, Southampton SO18 3HW
Contact: jackie@tremor.org.uk

Essential Tremor Awareness Day

9 March 2019 12:00 – 17:00
Orchard Suites, Holiday Inn, Gibson Road, Sutton SM1 2RF
Contact: jackie@tremor.org.uk

Salisbury Shakers

9 March 2019 10:30
Please note there has been a change of venue. New venue details:
Salisbury Playhouse, Malthouse Lane, Salisbury SP2 7RA
Contact: salisburyshakers@btinternet.com

Nuneaton Tremor Awareness Meet-up

10 March 2019 15:00 – 17:00
URC church 2 Chapel St, Nuneaton CV11 5QH
Contact: nuneaton@tremor.org.uk

Nuneaton Shaking and Dining

10 March 2019 17:15 – 19:15
Attleborough Arms, Highfield Road, Nuneaton, CV11 4PL
Contact: nuneaton@tremor.org.uk

Essential Tremor in Children Support Day

10 Mar 2019 11:00 – 15:30
Glacier Suite, IceSheffield, Coleridge Road, Sheffield, S9 5DA
Contact: kitty@tremor.org.uk

Queen Elizabeth Foundation Carshalton (NTF Information Table)

14 March 2019 10:00 – 15:00
QEF Mobility Services, 1 Metcalfe Ave, Carshalton SM5 4AN
Contact: jackie@tremor.org.uk

ET Awareness Day in Canterbury

23 March 2019 13:00 – 16:30
Age UK, Castle Row, Canterbury, Kent, CT1 2QY
Contact: jackie@tremor.org.uk

Leeds Awareness Meet-up

23 March 2019 13:00 – 16:00
Leeds Marriott Hotel, 4 Trevelyan Square, Boar Ln, Leeds LS1 6ET
Contact: lands@tremor.org.uk

Find out more about NTF events.

FIFTY GIGS IN A DAY 2019 IS THIS FRIDAY 8 FEBRUARY

Fifty Gigs In A Day 2019 is this Friday (although there have been gigs already from Space Elevator & Hanson Asiedu). Those with gigs this Friday are –


ADRIAN BELEW,
 PAUL CARRACKJARROD DICKENSONBARBARA DICKSONDODGY FAIRPORT CONVENTIONFMFROST*FUN LOVIN’ CRIMINALS

STEVE HACKETTKAISER CHIEFSKING KINGLETZ ZEPLOST VOICE GUYTHE SMYTHSSTONE BROKENTHOSE DAMN CROWSTHUNDER 

YESTHE YOUNG ‘UNS

Plus the Little Red Kings, Broken Witt Rebels, the Fierce & the Dead and Andrew W.K. will be joining in even though they are not currently touring.

All will be mentioning the work of Nordoff Robbins via their social media on Feb 8th

In addition there are some gigs taking place specifically plugging the work of Nordoff Robbins on stage and/or raising funds for them –

Folk night at the Railway Inn, Portslade tomorrow night (7 Feb) – thanks to Robb Johnson

Dandelion Charm are playing a gig at the Brunswick, Hove on Feb 8th. It is free entry and any donations on the night will go to Nordoff Robbins.

Folk duo Ninebarrow play North Ferriby Village Hall

Author Mark Stay has a signing event for his new book ‘The End of Magic’ and he will donate £1 for each copy sold and/or signed on the night (15 Feb)

Latest updates can be found here –

https://50gigsinaday.home.blog/

PS

Just Giving page is below if you’d kindly like to donate and support the work of Nordoff Robbins

https://www.justgiving.com/fundraising/fiftygigsinaday2019

Today is World Cancer Day

Every day, 12 families in the UK will be given the news
that their child has cancer.

On World Cancer Day,
Blake’s mum is asking for your help.

At just three years old, Blake was diagnosed with a brain tumour. He spent months in intensive care and had 18 months of chemotherapy. Blake has been left paralysed from the chest down and with other ongoing difficulties.

But now nine years old, Blake’s in school, he’s a happy little boy and has been stable for over four years. Let’s hope that continues.

Blake’s mum is asking for your help today – to give £12 for the 12 children diagnosed with cancer today.

    Watch Blake’s video   
Monday 4th February is World Cancer Day, when the world comes together to raise awareness and to take action to reduce the devastating impact that cancer has.

Today, 12 families in the UK will be given the devastating news that their child has cancer. To mark 2019’s World Cancer Day, we hope to raise awareness by shining a spotlight on this shocking statistic. Will you consider donating £12 to support young cancer patients and to keep their families together.

               Please give £12 for the 12 children diagnosed today            
Luke was diagnosed with hepatoblastoma, a very rare cancer when he was just six months old. Luke is now 10 years in remission. Claire tells us their story.Watch Claire and Luke’s video

World Cancer Day – Family Videos

For this year’s World Cancer Day, we asked families affected by childhood cancer to share their stories. They tell us about their journeys and show us why it’s so important to help fund breakthrough research and keep families together.

Charity News – Get involved in National Essential Tremor Awareness Month 2019

Something that not many may know about the wonderful work the National Tremor Foundation do in helping & supporting people and their families with various tremors. I have an essential tremor (a strange name as I could happily do without it!), which affects both my hands. March is National Essential Tremor Awareness Month. Read on for more how you can get involved – it can be as simple as putting up a poster in your local GP surgery to raise awareness.

ntf

March is National Essential Tremor Awareness (NETA) Month, and this year the NTF wants to make it bigger than ever.

Last year was the NTF’s fourth year of raising awareness for NETA Month.  This year we are organising more events including an Essential Tremor Awareness Day on the 9 March in Sutton.

NETA month as it’s called in the USA was started by the IETF to raise awareness of essential tremor and has since been growing from strength to strength.

For NETA 2019 we are looking for more people to support us and raise awareness about essential tremor. This could involve talking to your loved ones about essential tremor to actively fundraising for the NTF.

How you can get involved

1) Run an awareness event

Many people will be running awareness events during March to support others and raise awareness. These are a great way to meet others and share experiences. These are low cost and can be held at a local cafe or a pub. If you are interested in running an awareness event please contact us.

2) Donate

The NTF relies on donations, sponsorship and contributions in order to carry out its work. Why not make a donation, today!

3) Raise awareness

We are always looking for ways to help promote the foundation and raise awareness. Download one of our free posters and social media banners here. Why not print some out and bring them down to your local GP or hospital.

4) Gift aid

If you are a UK taxpayer, you may be eligible for Gift Aid, meaning for every £1 you donate, the NTF will be able to gain another 28p.

5) Do a sports challenge

Why not do something amazing that you have always wanted to do, such as parachuting, whilst raising funds for charity. There are tons of things you could do from running a 5K to scaling Mount Snowdonia!.

6) Ebay

Sell all your unwanted goods and eBay gives you the option to donate all or a proportion of the money to charity.

7) Get in touch your local community group

Contact your local community group and get them involved. This could be your local U3A, church or art group.

Get in touch if you would like to get involved!

News – MAKE-A-WISH There’s #FeelGoodFriday stories in here!

maw

Thirteen-year-old Jack loved to play the piano and saxophone, especially with his Grandad, who had a big influence on him. He was offered a scholarship because of his musical talent but, a week before his thirteenth birthday, Jack was diagnosed with Ewing’s sarcoma, a type of bone cancer.

Read Jack’s story

Jack was told his arm would need to be amputated. Thankfully, pioneering surgery in Austria meant only the damaged part of his arm was removed. Jack can no longer play musical instruments like before, but he’s passionate about composing music! So, he’s turned to us and wishes to own a computer that can help him compose. By sponsoring Jack’s wish today, you can help make his wish a reality!

Sponsor Jack’s wish

Nine-year-old Luke’s good deed

We can’t help children like Jack without the help of our supporters.  Last week we received a very heart-warming letter from nine-year-old Luke who did his own good deed to help seriously ill children. Read his inspirational letter here.

Luke’s letter

“I wish to own a hot tub”

Nine-year-old Ty is living with Duchenne muscular dystrophy, a condition causing his muscles to get progressively weaker. Ty’s wish  was the 100th hot tub wish granted in collaboration with the Hot Tub Warehouse! Click here to read all about Ty’s wish and how it’ll make a difference to his life.

National Deaf Children’s Society news

ndcs

Our event at Parliament in 2018. We took families and deaf young people to talk to MPs about tackling the funding crisis in deaf education.

Thanks for making a difference to deaf children

We value your opinions and always try to act on the information you give us – whether that’s through our membership survey, one of our polls, or an evaluation of an event.

Your views make a real difference – here’s how:

You put pressure on the Government

In October, thanks to you answering some quick questions about your child’s audiology service, we made a brilliant piece with Channel 5 News. This highlighted what you think the biggest problems are, and what the Government needs to do to improve them.

You fought for deaf children’s rights

In November, we asked you about cuts to deaf education. Your incredible response made Channel 4 News, The Guardian and Times Educational Supplement. We took your answers to the Minister responsible and argued for more money for deaf children’s education.

You kept us on track

In our 2018 membership survey you told us what matters to your family and how you think support for your child can be improved. We’re focusing our efforts on what’s important to you – including fighting for better services, campaigning for local authorities to provide radio aids and planning for a careers campaign.

Look out for our 2019 membership survey, which launches on 6 February. It’s another chance to set the agenda – so please don’t stop sharing your views.