Fundraising Pack

1. About Us 2. How Your Money Helps

3. Be Inspired 4. Organise an Event 5. Manage Your Event

6. Keep us Updated 7. The Important Stuff8. Contact

Contents

About UsDravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research.

The charity was founded in October 2008 and registered with the Charity Commission of England and Wales in January 2009. It was founded by parents looking for support and information about treatments and research, all of which was sadly lacking in the UK at that time. Since the charity was founded the membership has risen from just thirty families to almost four hundred.

Our Mission StatementDravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research

Dravet Syndrome UK operates on a national level and is made up of a team of trustees and five world-renowned professional advisors. This small team work very closely together to ensure we meet the needs of families affected by Dravet syndrome, whilst working with professionals in the field of neurology on research projects.

Dravet Syndrome UK has three primary aims:

1. To support families affected by Dravet syndrome emotionally, practically and financially:

2. To fund medical research into Dravet syndrome and other related genetic sodium channel epilepsies.

3. To raise awareness and understanding of Dravet syndrome within the professional community.

How Your Money Helps?

£5 helps pay for the postage of a Family Welcome Pack & Guide to

Dravet Syndrome

£30 helps pay for Portable Finger Oximeter or one Super Siblings Award

£50 helps pay for a Family Gathering Grant

£125 helps pay for a Video Monitor

£250 helps pays for a family grant to Center Parcs or one MedPage Monitor

£500 helps pay for an Emfit Monitor

£1,000 helps pay for the design & print of 5000 information leaflets or an Adult

Assistance Grant

£2,000 helps pay for Sibling Activities at Center Parcs

Be InspiredIf putting an event on is too much how about doing something yourself, choose an event, carry a sponsor form around, set up your own JustGiving page on our charity page www.justgiving.com/dravetsyndromeuk and away you go!

Some Sponsorship ideas

• A sponsored walk, run, swim, cycle • Ask your friends and family to sponsor you for a minimum amount per mile on a bike or lengths

in the pool. The further you go, the more you raise for Dravet Syndrome UK! Or maybe you feel brave… fancy a Skydive?

Do chores for money

Why not ask for a donation to do some hard work. Here are some of the chores you could help with to raise money for Dravet Syndrome UK - A great way to involve the children!

Car washing Gardening Dog walking Dog or cat sitting Doing the washing-up Reading to your younger brothers or sisters Helping with the shopping Collecting rubbish or helping to clean the playground Recycling with your family or groups at school

Collect & recycle phones or ink cartridges

There couldn’t be an easier way to raise money than by recycling ink cartridges and old mobile phones . We are registered with “Recycle 4 Charity” and for every ink cartridge you send we get £1. Mobile phones are worth anything up to £30. Check out their website at www.recycle4charity.co.uk and register to start raising money for DRAVET Syndrome UK. They will send you the posting bags, all you have to do is pop them in the post - it could not be easier!!

Fundraise in the workplace

Why not get your workmates together to raise cash. Staf fundraising is a great opportunity to develop team skills and improve morale. What’s more, research shows that 86% of consumers have a more positive image of a company that supports a charitable cause.

You could nominate Dravet Syndrome UK as your charity of the year and we can work with you to develop press and PR opportunities.

Organise an EventYou can help us raise funds by holding an event of your own. Follow our quick tips and you will be on the road to success in no time.

Five easy steps to organising a fundraising event:

1. Be creative Consider how and what you would like to do to help raise money for Dravet Syndrome UK and most importantly make it fun!

2. Promote The more people you tell about your event, the more money you are likely to raise. Again, be creative. Encourage your friends and family to use Facebook and other social networking sites to promote the event, use email, newsletters or even contact the local paper!

Don’t forget to tell us (we’ll help drum up support wherever you can!)

3. Get permission This is really important! Please make sure you have asked permission from relevant authorities where applicable, before doing anything.

4. Fundraise Sell tickets, get sponsored and do as much as you can before the actual event to make sure you raise as much cash as you can. Setting up an online JustGiving page and sending the link to it to all of your friends and family is a surefire way to help get more sponsorship. You can set up a page at: www.justgiving.com/dravetsyndromeuK

5. Get going Do all the preparation before the day to make sure your event runs smoothly. Ask your family/friends to help you with some of the organising and then get on with having fun and raising money for Dravet Syndrome UK!

Top Tips

• Remember, the simple ideas work best! Don’t try anything that is too risky. When planning, make sure you event doesn’t clash with a key event such as a pop concert or a big football game.

• Make sure you create a plan and factor in enough time so you don’t find yourself panicking at the last minute.

• Make sure you venue is big enough. • Don’t forget about disabled access. • Think about the simple stuff - what about seating? Electricity? Heating? Is there enough car

parking? • STAY SAFE! If you are unsure about people’s safety, check with your local authority and

venue owner to ensure your event is sage for everyone.

 

Manage Your EventMany of you will be familiar with JustGiving, a fantastic way to manage fundraising efforts.

It’s a great and easy way to keep track of your fundraising and who has sponsored you. It is also a great way to ensure Gift Aid is added to every eligible donation.

You can visit to www.justgiving.com/dravetsyndromeuk to set up your own personalised page.

Gift Aid Form

Use Gift Aid and you can make your donation worth even more to Dravet Syndrome UK. For every pound you donate Dravet Syndrome UK can claim an extra 20p from the Inland Revenue, which makes a huge difference to us but doesn’t cost you a penny! So if you want your donation to go further Gift Aid it! Just select the tick box on JustGiving when donating and you’re away!

How to send funds to Dravet Syndrome UK

Once you have completed all your fundraising please complete the enclosed Notification of Fundraising form and send this to us with the monies raised. You can send your fundraising into us by cheque made payable to ‘Dravet Syndrome UK’ to our registered address or through our JustGiving page at www.justgiving.com/dravetsyndromeuk

Keep Us UpdatedWe need to know what events you are planning!

Let us know what you are doing, when it is and send us in any photos afterwards. We can send Thank You Cards and certificates out to your supporters and help promote the event on our website and social channels. All you have to do is fill in our fundraising notification form (enclosed) or contact us through our website; www.dravet.org.uk

We have a dedicated fundraising manager who will be able to respond to your enquiry and help get you started

The Important StuffCharity fundraising is regulated by law, so you need to consider legal issues. To ensure your fundraising is legal, check the points below which outline the procedures you need to follow.

Public CollectionsTo collect in the street, or a public place, you will need to obtain a license from your local council. When you apply the council will give you regulations for collecting. As public collections are popular it is a good idea to get permission well in advance.

Raffles, Tombolas, LotteriesPlease be aware this is governed by the Lotteries and Amusements Act 1976: A lottery/raffle/tombola does not have to be registered so long as tickets are sold and results announced at the event. There should be no cash prizes and no more than £50 spent on prizes. There is no limit to the value of donated prizes.

Printed MaterialsIf you are planning to produce any materials for your event such as posters, tickets or flyers, please contact us before they are printed as we will need to see a copy for approval. When producing information it is important to state exactly how much money will go to the charity. For example, if all proceeds are to go to us the written materials will need to state that the event is being organised "in aid of Dravet Syndrome UK”. Otherwise you will need to show exactly how much is going to the charity - "for every ticket sold, £1 will go to Dravet Syndrome UK"). This is now a legal requirement.

We are also required by law to ask you to include our registered charity information on all printed materials. This refers to the full charity name, address, registered charity number and registered company number. These are as follows:

Dravet Syndrome UK (Registered Charity No. 1128289) PO Box 756 Chesterfield S43 9EB

Dangerous ActivitiesDravet Syndrome UK cannot be held responsible for any injuries or damage caused by participating in dangerous activities. You will be asked to sign a disclaimer form before undertaking any such activity.

InsuranceIf your event involves the public or any activities which could cause people to injure themselves please make sure that you take out proper Public Liability Insurance cover. LicencesPlease check to see if you need to obtain a special licence for your event. Licences are needed for entertainments (if the venue does not already have one). If you sell food at a fundraising event you must follow food safety laws. You can obtain guidelines from your local environmental health department. You will need a licence to sell alcohol at an event unless the venue already has one. To obtain a temporary licence, contact the licensing justice at your local magistrate’s court at least one month before the event.

General SafetyIt is your responsibility to make sure that all those involved with the event are safe from harm. You can always check with the local fire brigade, the Red Cross or St John Ambulance for advice and assistance on the day.

Get fundraising and have fun!

We are so grateful of the efforts from our incredible supporters - without you our work would not be possible.

You are amazing!

Dravet Syndrome UKPO Box 756Chesterfield

S43 9EB(Registered Charity No. 1128289)

Tel: 07874 866937

For questions or queries regarding fundraising please contact our Fundraising Manager on:

linzi.c@dravet.org.uk