Impact newsletter - July 2016

impact July 2016

HOW YOUR SUPPORT IS BRINGING US CLOSER TO A WORLD FREE FROM MND

Thanks to you, we’re getting closer than ever to discovering the causes of MND

2016 is our Year of Progress Thanks to your support, we were able to embark upon the biggest MND research project in history – Project MinE. The aim is to sequence 22,500 DNA samples across 16 countries, to uncover the genetic causes of MND. We’re on a long journey, but so far almost 1,500 samples have been sequenced in the UK: so a huge thank you to everyone whose support has helped to make that happen.

As the name suggests, Project MinE is all about digging deeper into MND DNA, and we’re already using some of

Testing the new Sheffield Support Snood More comfortable, more dignified

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the newly-discovered data in this year’s research projects, including two of our new non-clinical fellowships (more information inside). Ashley Jones is one of our new fellows, and his research – which you helped to support in February’s See More Clearly appeal – continues apace.

And who better to nurture Ashley, one of our next generation of brilliant MND research scientists, than Professor Ammar Al-Chalabi? Indeed, we’re delighted to tell you that Professor Al-Chalabi has recently been awarded

the prestigious Sheila Essey Award from the American Academy of Neurology for his role in the research of the genetic causes of MND. His award – and all these fantastic developments in MND research during our Year of Progress – is testament to your support. You’re bringing us closer than ever to understanding the causes of MND – thank you again.

Find out how you’re helping inside

“It’s awesome!”

Thank you from our young carers

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Silence Speaks

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Thank you for taking part

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impact

on research

You’re helping us fund four non-clinical fellowships for the first time ever Thanks to your support, these ‘stars of the future’ hope to bring us closer to a world free from MND We’re sure you’ll join us in wishing a warm welcome to our four new non-clinical fellows. Thanks to your support, for the first time ever, we’re able to fund a collection of brilliant new research scientists, who’ll further strengthen our fantastic team.

Two of the new fellows, Ashley Jones and Russell McLaughlin (pictured), joined us earlier this year – their studies are already contributing to our understanding of the genetic causes of MND. Using data from Project MinE, Ashley is compiling a list of possible MND-causing genes,

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which he’ll prioritise for further investigation – and which we’ll then use to develop therapies.

Meanwhile, Russell aims to identify the genetic causes of MND in specific populations by sequencing the genetic codes of over 1,000 people in Ireland, 700 of whom have a form of MND – so that we’ll know whether people with certain genetic backgrounds are more at risk of developing the disease.

By working at the very frontiers of genetic research into MND,

Ashley, Russell and their colleagues aim to understand how certain genes influence the causes of the disease. Your donations mean that our researchers can focus on unlocking the secrets of MND – so that we can diagnose MND quicker than before, and create better-targeted treatments.

Your gift today could fund tomorrow’s ground-breaking MND research.

Thank you x 100!

100 people living with MND are testing the latest neck collar, thanks to your support Last year, supporters like you helped to fund the development of a new neck support. Following the success of the pilot study, we’re delighted to tell you that 100 people living with MND are now trialling the new design through MND care centres across the country.

Previously, there’s been no neck support specifically for people living with MND – an issue that Dr Christopher McDermott and his team of designers, physiotherapists, and occupational therapists are all keen to address.

People living with MND are playing a vital role in the Sheffield Support Snood’s development. “We are excited about getting feedback from people on the snood who were not involved in the design of it or the

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initial small study,” commented Dr McDermott. “The comments from people who take part in the 100 collars project will be important in helping with the ongoing process of refining the design of the support snood.”

Let’s be clear By supporting our See More Clearly Appeal, you’re helping us to investigate MND-causing genes like never before A huge thank you to everyone who kindly donated to our See More Clearly appeal back in February.

So far, you’ve helped to raise a fantastic £74,000. By funding nonclinical fellow Ashley Jones’ work to uncover the invisible genes that cause MND, your support is helping to develop our understanding of the disease and future treatments.

Thank you again.

In the near future, we intend to take the design to a commercial manufacturer so that the new Sheffield Support Snood is available to anyone living with MND.

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impact

on care

“It’s awesome!”

A big thank you from our young carers Caring for someone living with MND is a difficult experience for anyone – especially young people. Our new guide is designed to support young people affected by MND at every stage.

Put together with the direct involvement of young carers and school pupils, it’s easily accessible and is now available via a web app – a first for us! It contains a wealth of practical information, where to go for support – and explains the emotional challenges that young people and young carers affected by MND will face.

As one young carer says: “The guide is extremely thorough and really easy to read. It carefully takes you through the MND journey one step at a time. It’s awesome!”

We couldn’t agree more. Thank you for your support.

Read the guide: www.mndassociation.org/ypinfo

You’re doing something very special Welcome to the first of four specialist MND posts No-one should ever face the aftermath of an MND diagnosis alone. Thanks to your support, we’ve just recruited the first of our new specialist nurses and practitioners to meet the complex needs of people living with MND. “I’m really excited about my new role,” says Marie-Suzanne Magee, who started her position in May. “I want to help ensure that people with MND receive a co-ordinated service and high quality care from the Royal United Hospital and Dorothy House Hospice – and just as importantly, to be there for everyone involved: patients, their carers and professionals.”

living with MND in the Bath area desperately need – an expert on care, and a comfort during a challenging time. “I want to remove unnecessary stress, and ensure that people maintain their independence and dignity, and have the best quality of life as possible.”

It’s the simple things that count We’d like to thank everyone who’s donated to our Simple Things appeal.

Your donations mean more people with MND are getting the care and equipment they desperately need to help them feel independent, safe and comfortable every day.

Marie-Suzanne will be the single point of contact that people

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impact

on awareness and campaigning

Giving us a voice: Silence Speaks was a great success Thanks to everyone who took part in June’s sponsored silence In June, a hush descended across the UK as hundreds of individuals, teams, companies and schools kept schtum for this year’s Silence Speaks. Some people stayed quiet for an hour or two, while others managed to not say a word for up to five days.

As well as raising thousands of pounds, Silence Speaks helped

more people understand what it is like for more than 80% of people living with MND who will have difficulty speaking.

Thank you to everyone who took part. With around 5,000 people living with MND in the UK, it’s vital that we continue to raise awareness and muchneeded funds to fight this cruel disease.

Working with NICE to transform MND care across the country We successfully lobbied the National Institute for Health and Care Excellence (NICE) to produce a new guideline for a ‘joined-up approach’ to MND care After over four years of campaigning, NICE published its long-awaited guideline on MND earlier this year.

Developed with the input of the MND Association – and with feedback from our supporters – the new guideline will be the main reference for health and social care professionals. Chief Executive Sally Light is delighted: “The new guideline will shape future care and have a huge influence over the quality of life for people living with MND, their families and carers.”

New MND Connect helpline number: 0808 802 6262 Thousands of people living with MND need your help today and in the >>> future. You can help give them the care they desperately need – and help to get closer to a world free from MND. Your support is vitally important.

Please donate today.

Registered Charity No. 294354 © MND Association 2016 Impact News 16JL

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