Where would we be without you? Legacy guide

Where would we be without you?

The truth is, we wouldn’t be able to fight muscle-wasting conditions without your support.

Leaving a gift in your Will – the guide

2 In this guide, we’ll introduce you to some families who rely on the services of the Muscular Dystrophy Campaign, such as up-to-date information, practical advice and a community of like-minded families, as they deal with the effects of living with muscle-wasting conditions.

And then we’ll share some useful and practical information with you about preparing a Will. Do get in touch with us if you have any questions at all.

Contents 3

Meet Ethan

4

Meet Abbi

5

Meet the Lloyd family

About Wills 6

Why is a Will important?

6

Making your Will – what to bear in mind

7

Suggested wording

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Glossary of Will terms

We are able to support one in four of our research projects through the generosity of families leaving us gifts in their Wills. www.muscular-dystrophy.org

Where would we be without you?

The truth is, we wouldn’t be able to fight muscle-wasting conditions without your support.

We rely almost entirely on voluntary donations and gifts in Wills to continue our groundbreaking research and all of our vital work supporting families affected by musclewasting conditions.

The Muscular Dystrophy Campaign is the leading UK charity fighting muscle-wasting conditions. We are dedicated to beating muscular dystrophy and related neuromuscular conditions by finding treatments and cures and improving the lives of everyone affected by them. Around a quarter of our work is funded through gifts in Wills.

The charity funds groundbreaking research into treatments and cures for muscle-wasting conditions, and works closely with families affected by these conditions to campaign for governments to change policy and increase funding and provision of essential services for the 70,000 people in the UK affected. The charity also helps people affected by muscular dystrophy and related neuromuscular conditions to fight for the benefits, services and equipment to which they are entitled.

Since it was established in 1959, the Muscular Dystrophy Campaign has invested more than £50m into pioneering research to find treatments and cures for muscular dystrophy and related neuromuscular conditions. We rely on the support of people like you to build on the legacy of foundational research that we have funded. A gift in your Will is a wonderful way to ensure our vital work continues.

Leading research. Supporting people.

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Meet Ethan Hello. I’m Ethan. I’ve got lots of toys. Some are on my bed and some are in my cupboard. I like cars. I’ve got my own power wheelchair.

When Ethan was born in 2008, his little body was completely floppy. Specialists told his mum and dad to expect the worst.

Ethan has congenital fibre type disproportion with the faulty gene being ACTA1. While he is a typical little brother, he is also a unique little boy. Doctors call him ‘child 3’, as at the time he was only the third child in Europe that they knew of with this specific diagnosis.

Ethan’s floppy little newborn body sent the medical specialists into a flurry. In fact, for the first year of Ethan’s life, his parents said they went through a rollercoaster of potential diagnoses followed by temporary relief as Ethan had tests and then they returned negative. Considering the possibility that they might never get a diagnosis, Ethan’s parents were surprised when the paediatrician suggested he should have a muscle biopsy and some further blood tests when he was just over a year old.

muscles are often affected in CFTD and this has happened in Ethan. Tests showed he was not breathing fully overnight and Ethan is now on overnight ventilation, which has made a huge difference.

He also has regular hydrotherapy, which has helped him to develop his strength and mobility, and he uses his powered wheelchair when he goes to nursery, to the respite centre and on outings.

Ethan’s mum and dad hope that one day there will be an effective treatment – or indeed a cure – for rare muscle-wasting conditions such as his.

You don’t have to be wealthy to leave us a gift in your Will. When you remember the Muscular Dystrophy Campaign in your Will, you are helping to build a future for children like Ethan. Today.

Ethan is a lively, smiley, witty little boy who is the class clown at nursery school, who annoys his older sister and who absolutely loves cars.

With such a rare condition, a strong future is the least he can ask for.

About three months later, Ethan was diagnosed with congenital fibre type disproportion. Not only that, but the genetic consultant had located the faulty gene – ACTA1 – making Ethan’s diagnosis almost one in a million. After his mum and dad were tested, it was found that neither had any trace of the faulty gene; Ethan’s faulty gene had appeared spontaneously.

The prognosis for Ethan is very much unknown. His parents say they really just manage the symptoms. The breathing www.muscular-dystrophy.org

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Meet Abbi Hello, I’m Abbi. I’m four. I like school. My muscles are poorly, so sometimes I have to use my wheelchair.

Abbi Bennett’s has a rare muscle-wasting condition called Ullrich congenital muscular dystrophy. She can walk but she cannot jump and she battles to get up after sitting. Sometimes even a strong gust of wind could knock Abbi’s frail little body over. Her muscles will weaken and waste over time and she will most likely use a wheelchair full-time through her teen years.

And she’ll struggle to breathe unaided.

Abbi is one of Gary and Sarah Bennett’s four daughters. She was born in February 2008.

Everything seemed fine at first. However, when Abbi was a few months old she wasn’t gaining weight as she should and by six months she wasn’t crawling or pulling herself up as other babies do. Doctors were unable to tell them what was wrong and she was referred to the Birmingham Children’s Hospital. After various tests and a biopsy, in April 2011 Abbi was diagnosed with Ullrich congenital muscular dystrophy.

“We were in total shock, mainly because nobody could really tell us about the condition or what we could expect for the future. Over the last two years, more information has become available and we

www.muscular-dystrophy.org

know more about what we are dealing with, which makes it a little easier for us and for Abbi to accept and understand,” said Gary.

Abbi is an intelligent and very determined little girl, who sees the best in life and in people, and copes with her condition in a way that is constantly commended by her peers and family alike.

There is no cure, but scientists are working round the clock to try and develop the first treatments for this and other devastating muscle-wasting conditions. With your help we can continue to fund research which could improve the lives of individuals living with conditions like Abbi’s.

We cannot win this fight against musclewasting conditions without the support of people like you. By leaving a gift in your Will to the Muscular Dystrophy Campaign, you will ensure today that the vital research work continues.

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Dan, Sam and Tom - three boys from the Wirral It was scary when our mum said we should practise for when we’d need to be in a wheelchair. We didn’t want to give up.

I find it really helps if you keep your head up, and try and push yourself to do as much as you can for as long as you can. Having a positive mental mindset also helps.

Dan Lloyd is 17 years old. He has Duchenne muscular dystrophy. His twin brother, Sam, and younger brother, Tom, 14, also have the severe musclewasting condition. All three of them use powerchairs.

“Not being able to walk any more, it’s great to be more mobile in the water and we can walk around the pool,” said Sam.

The three brothers, who live on the Wirral with their mum and dad, Helen and Chris, all go to Mosslands School. They first came to the attention of the Muscular Dystrophy Campaign when Dan and Sam achieved outstanding GCSE results. Proving that their condition is no barrier to achieving excellence at school, the three inspiring brothers are top performers in their years.

Duchenne muscular dystrophy is a genetic muscle-wasting condition caused by the lack of a protein called dystrophin. It is a serious condition that causes muscles to weaken and waste over time, leading to increasingly severe disability. The condition affects not only the muscles in the limbs, but also those of the heart and lungs, sometimes leading to life-threatening complications. The condition almost always affects boys, with most, like the Lloyd brothers, needing to use a wheelchair by the age of 12.

Sam, the older twin by half an hour, said they try and make the most of the ability they have to use their legs and arms. Every week they all go for either physiotherapy or hydrotherapy, and being in the water relaxes them and releases tension in their muscles.

“We have always tried to defy the doctors and break all the rules,” said Sam.

About 100 boys with Duchenne muscular dystrophy are born in the United Kingdom each year. Few will live to see their thirtieth birthday.

The Muscular Dystrophy Campaign leads the search for treatments and cures for Duchenne muscular dystrophy. We provide expert advice and support for individuals and families living with the condition, for carers and health professionals, by: • funding research projects into Duchenne muscular dystrophy, and providing regular information about research progress • supporting the training and development of the next generation of scientists and funding clinical trials co-ordinators in the drive towards potential treatments • offering advice and information and, through our advocacy service, enabling people to access services and equipment they are entitled to • providing grants towards specialist equipment to help people to live as independently as possible • helping people to connect with each other through our local Muscle Groups, via our online forum TalkMD, at conferences and events and through Trailblazers, our national network of young disabled people.

Beating conditions like Duchenne muscular dystrophy is a massive challenge and we cannot do it without your help. When you leave a gift in your Will to the Muscular Dystrophy Campaign, you will help ensure that together, we can win the fight.

www.muscular-dystrophy.org

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Why should I leave a gift in my Will to the Muscular Dystrophy Campaign?

Making your Will – what to remember

Every gift, in every Will, makes a difference to the vital work of the Muscular Dystrophy Campaign.

There are two key things that you need to consider when you decide to draw up a Will.

One such legacy came from a lady in Bristol, who generously left the whole of the residue of her estate to the charity. We received almost £400k from this estate to help us to support children and adults to gain greater independence and an improved quality of life.

We also received a gift of £5,000 from a gentleman from Scotland, and this has helped us fund groundbreaking research.

A £100 gift in a Will from a lady from Merseyside helped us to support ongoing work across the country.

Including a gift in your Will is much more than a donation. It sends out a very strong and personal message of hope for the future.

One in four of our research projects, for example, is made possible only through gifts left by supporters in their Wills. With gifts in Wills ranging from £100 up to £400k, we can ensure that our future research can continue, which gives hope to the 70,000 people in the UK who are affected by muscular dystrophy and related neuromuscular conditions.

Remember, you don’t have to be wealthy to leave a gift to the charity in your Will. Every gift in every Will makes a difference.

Why is a Will important?

Without a Will, you will have no control over who will inherit your belongings. No-one will know what your wishes are, and it can cause difficulties and complications for the loved ones you leave behind. By making a Will, you will have the satisfaction that you have made provision for those close to you.

Remember, there can be more than one family in your Will; future families needing the support of the Muscular Dystrophy Campaign.

www.muscular-dystrophy.org

Use a solicitor

We strongly recommend that you take legal advice when drawing up your Will. A Will is a legal and binding document, and there are specific rules about how it should be drawn up.

If you do not have a solicitor, the Law Society can help you find one. Call them on 020 7242 1222 and they will put you in touch with a solicitor in your area.

List your assets and liabilities

It is important, when making or changing your Will, to decide how you want to split your estate. Consider everyone that you would like to include in your Will, and what you would like to leave them. It’s a good idea to compile a list of names and addresses of these people before visiting your solicitor, as it will save you time and money. You may also want to include a favourite charity, such as the Muscular Dystrophy Campaign.

When the time is right for you to make your Will, please remember the Muscular Dystrophy Campaign.

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Suggested wording for your Will

Glossary

If you decide to support the Muscular Dystrophy Campaign through a gift in your Will, then it is important that the charity is named as:

When making your Will, you may come across some of the following words. Here is what they all mean.

Muscular Dystrophy Campaign (Registered charity number in England and Wales 205395 and in Scotland SC039445) 61A Great Suffolk Street, London SE1 0BU By including our charity name and number exactly this way, you are ensuring that your gift will find its way to us in the way you intend.

Without gifts in Wills, 25 percent fewer families would be helped by the Muscular Dystrophy Campaign.

Leading research Supporting people Leaving a share of your estate to the Muscular Dystrophy Campaign

If you would like to leave a share of your estate to the Muscular Dystrophy Campaign, it means that once you have provided for your family and friends with specific gifts of money or items, the Muscular Dystrophy Campaign will receive all or part of the residue of your estate. If this is what you wish to do, we suggest that you include the following wording in your Will: I give all [or a ‌ percent share] of the residue of my estate to the Muscular Dystrophy Campaign (Registered charity number in England and Wales 205395 and in Scotland SC039445), 61A Great Suffolk Street, London SE1 0BU.

Leaving a specific amount of money to the Muscular Dystrophy Campaign If you wish to leave us an amount of money of your choosing in your Will, we suggest that you include the following wording:

Pecuniary legacy: a specific amount of money that you wish to leave.

Residuary legacy: the remainder of your estate after all other gifts have been made. The major advantage of a residuary legacy is that its value should increase with inflation.

Codicil: a document containing changes or additions to an existing Will.

Estate: everything you own at the time of your death.

Executors: those you have appointed to handle your affairs according to your Will.

Legacy: a gift left in a Will, also known as a bequest.

Beneficiary: a person or organisation benefiting from a Will.

Probate: the legal procedure to establish that a Will is valid and genuine.

Assets: all of your possessions, including property, car, furniture, jewellery, shares, etc.

I give to the Muscular Dystrophy Campaign (Registered charity number in England and Wales 205395 and in Scotland SC039445), 61A Great Suffolk Street, London SE1 0BU, the sum of [amount in figures and words].

Liabilities: everything you owe, including your mortgage, loans and credit cards, etc.

If there is something you treasure which you want to pass on to someone special, the best way of ensuring this happens is by including your wishes in your Will. www.muscular-dystrophy.org

Where would we be without you?

You don’t have to be wealthy to leave us a gift in your Will. When you remember the Muscular Dystrophy Campaign in your Will, you are making more than a donation. You are sending out a strong and very personal message of hope for the future for Ethan, Abbi, Dan, Sam, Tom and all the other families affected by muscle-wasting conditions.

When the time is right for you, please get in touch with us.

Muscular Dystrophy Campaign 61A Great Suffolk Street London SE1 0BU t: 020 7803 4834 e: s.greenwood@muscular-dystrophy.org w: www.muscular-dystrophy.org

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445