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.

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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!

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

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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

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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.

Music news – SPACE ELEVATOR play Oxford gig on 31 January

Space Elevator play the Haven Club at the Bullingdon, Oxford on Thursday 30 January.

It is only £12 in advance and there are various packages available that include signed CD’s and more. Full details can be found here

The band are kindly supporting Fifty Gigs In A Day 2019 which helps raise awareness of the work done in music therapy by the Nordoff Robbins charity.

News – CANCER ON THE ROCKS FESTIVAL 2019

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You can find out more, including ticket details, here

Oragniser Rick Palin explains more abiut this fundraiser –

I am Rick Palin the MD of Skyfire Promotions Ltd. A company that specialises in promoting new music from up and coming bands through our subsidiaries, Skyfire Interactive, Skyfire Records, Firebrand Radio and Frame Music.
In January 2017 my father went down ill of what we thought was just a bug and over the next 8 months I watched his health decline as he slowly died from Lung and Spinal Cancer. I have to admit it was the hardest time in my life watching him decline day by day and knowing there was nothing I could do to help him.
That is when it hit me. You see these days Cancer is that heavily a used word we treat is as the norm and it is not until you see the devastating effects this horrible disease has on people affected and their loved ones that you truly begin to understand the gravity of this situation.
How did I get through this? honestly, I don’t know but when the time came and I had to hospitalise him my dad was not doing well and I was a complete wreck and it was at that point that my sanity was restored and my dad was made comfortable by the brave men and women of Macmillan.
What these good people do on a day to day basis dealing with death, helping families grieve, helping families deal with the pressure, stress, strain of feeling absolutely useless in the grips of this life taking illness How they cope with looking after so many people I will never understand they are truly remarkable people.
I thought after my Father died of writing them a cheque for a few hundred quid and to be honest that was not enough but I also tried to focus on remembering my dad for who he was and that’s when the idea for Cancer On The Rocks was born.
Our first year we raised £2,500.00 for Macmillan, This year I intend to beat that!
It’s early in the day I know but I want to make a very big point of saying thank you to the musicians, our sponsors, our teams of people, and our hosts for making this an actual reality. To show the love and support for this event that you guys do is phenomenal.

Macular Society news

AMD patients regain sight from stem cell treatment

In March we reported on the two patients with wet age-related macular degeneration, who received a new treatment derived from stem cells and regained enough vision to be able to read.

Read article

Have you seen our new film ‘5 years through the eyes of a mum’?

In Macular Week we launched our short film, illustrating the impact of macular disease on a mother and her son, as he grows up. The film has recently been nominated in the Charity Film Awards. 

Fundraiser in the spotlight on ITV’s Love Your Garden

In July, one of our inspirational and long-serving volunteers, Betty Richards, received a garden makeover on Alan Titchmarsh’s ITV’s show.

Avastin

In September, NHS bosses won a landmark legal battle against two multinational drug firms. The victory for the 12 Clinical Commissioning Groups (CCGs) in the North of England means Avastin can be offered as a treatment to patients with wet age-related macular degeneration (AMD).

Our new ambition

In National Eye Health Week we launched our new ambition – to fund more world-class research and beat macular disease, for good.

Where next for dry AMD and Stargardt research?

In October, we provided an update on progress being made into research for macular disease, after a team from Warwick Medical School reviewed hundreds of articles about possible treatments.