CRY Fundraising Pack

FUNDRAISING

PACK

INSIDE A - Z of Fundraising

CONTENTS

4. Fundraising Ideas 6. CRY Fundraising Events 6. Fundraising Challenge Events 8. Alternative Fundraising 10. Gift Aid, Payroll Giving & Matched Giving 12. Planning Your Event 14. Fundraising Guidelines 16. Setting Up An Online Page 17. Fundraising For A Memorial Fund 17. Fundraising For More Than One Charity 20. Representing CRY At Your Event 22. Patrons 24. What To Do Once You’ve Completed Your Event 28. About CRY 26. Donate To CRY 29. Media Training And Support Guide

WHY YOUR SUPPORT IS SO IMPORTANT A Message from Alison Cox Thank you so much for your interest in raising funds for Cardiac Risk in the Young (CRY). As a charity, we rely on public donations and are extremely grateful and touched by the enormous fundraising efforts of families and friends affected by young sudden cardiac death (YSCD).

The story began in 1995, when I founded the charity to raise awareness of young sudden cardiac death. Since then, it has been an amazing journey and it is remarkable that we have been able to achieve so much from such humble beginnings. Thanks to the incredible commitment of supporters, we are having an impact on reducing the terrible legacy of suffering caused by young sudden cardiac death.

We know that many of you already dedicate a huge amount of time and effort to fundraise for CRY – from parachute jumps, overseas treks, running/cycling events, walks, coffee mornings and other social events to your own personal memorial events.

Since 1995, you have helped to raise millions of pounds that have been invested in some of the charity’s key initiatives to help bereaved families and promote lifesaving screening programmes.

CRY has many ambitious projects and your fundraising has enabled the charity to provide the support and research to help save young lives. Our programme of activities strives to prevent these tragedies through: l Our National Screening Programme l Developing the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology l Funding medical research into young sudden cardiac death l Raising awareness of the risk of undetected cardiac conditions in young people CRY also supports young people diagnosed with life-threatening cardiac conditions through: l The myheart Network We support those affected by young sudden cardiac death by: l Offering a fast-track expert cardiac pathology service through the CRY Centre for Cardiac Pathology l Providing a bereavement support service to help those who have suffered a loss l Providing information and literature free of charge We hope that you find all the information you need here to inspire your fundraising.

Good luck and we look forward to hearing about your efforts and sharing them with our families.

Thank you again

Alison Cox MBE (CRY Founder)

FUNDRAISING IDEAS

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FUNDRAISING IDEAS If you’re struggling for ideas and are unsure of what you would like to do to raise money for CRY, please find some inspiration over the next few pages.

Fundraising At School

Fundraising At Work

This can include:

These can include:

lA CRY day – people to wear RED clothes, shoes, accessories and maybe even hair!

lS wear box – CRY can provide cardboard donation boxes to be used for this

l Car wash l Fancy dress competition l Talent show lG uess the amount of ... jar – Everyone pays a pound and the winner wins the jar and its contents lM oney snake – everyone brings in spare change from school and a ‘money snake’ is created around the school. lS elling Christmas/birthday/seasonal cards – designed by the pupils l Book sale lB ake sale – take part in CRY’s Great Cake Bake during Raising Awareness Week! lW alk to school week – Money saved on petrol and bus fares goes to charity lS marties challenge – challenge each child to fill a tube of smarties with 20p’s and donate it to CRY. Let them eat the smarties first to inspire them!

A is for Animals

lR affle/Auction – prizes could be donated Don’t f by colleagues/ o ask yo rget to local companies/ u about r boss matc management! giving! hed See p.1 0 l Job swaps lS ponsored “giving something up day” l I f you use your car or public transport have a “walk to work” week – you can then donate what would have been your petrol money or bus/train fare to CRY lR un a sweepstake – during big sports events lS ponsored body wax – find a daring volunteer and let your fellow colleagues take pleasure in watching their pain while donating money.

Dress up as your favourite animal for a day or do a 10k? Four legged friends can fundraise too!

FUNDRAISING IDEAS

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B is for Bingo Evening Get all generations of the family or friends together for a classic evening of entertainment.

Request donations for the Bingo cards.

FUNDRAISING IDEAS ALTERNATIVE FUNDRAISING

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In Your Community There are many ways to fundraise in your community, here are a few ideas: lA bake sale – everyone loves cakes! Rent out a venue and get the community baking & buying! l Swap shop – Raise money for CRY and update your wardrobe. lC offee morning – Hold a coffee morning and have each participant pay a small donation.

lS treet Party – Get your neighbours together and hold a party in your street to raise awareness and funds (subject to permission being granted). lG ala dinner – For something a bit more fancy, rent out your local hall or hotel function room and hold a fabulous gala evening. Charge for tickets and serve a meal. You could even hold an auction at the same time. Some venues may even donate the space as it is for charity!

Fundraising Challenge Events

l Kilimanjaro Trek

If you’re looking for an innovative, yet simple, way to raise funds, CRY works with a company called Skyline, experts in organising fundraising challenge events both overseas and in the UK. With their knowledge and expertise, they are able to offer you the best opportunities to challenge yourself and raise money for CRY!

l Sahara Trek

There is very little cost for you, as the fundraiser, to pay to go on these once in a lifetime opportunities. You will need to raise a specified ‘minimum sponsorship’, of which CRY is guaranteed to receive a certain amount as a donation.

Please note: non-refundable deposits are required for all ‘challenge’ events.

l Peru Trek If none of these events really appeal to you, there are a number of other specialist events organisers who you can contact and still raise money for CRY. Two such organisations are Across the Divide (www.atd-expeditions.co.uk) and Discover Adventure (www.discoveradventure.co.uk)

Below is a list of the challenge events that we currently offer. If you would like to find out more about these events, please go to: www.c-r-y.org.uk/charityfundraising-challenge-events or email ben@c-r-y.org.uk. l London-Paris Bike Ride l 3 Cities Bike Ride l China Trek l Iceland Trek

C is for Car Wash Set up a private car-wash and ask people to make a donation to CRY.

FUNDR AISING E VENTS Every y

ear involved CRY organise s w support ith events wh or gets e e rs re CRY c a n charity.

Informa take part for the tion on is inclu the ded intereste as an insert. se events If you d in a please email e ny of these ev are en vents@ c-r-y.o ts rg.uk

FUNDRAISING IDEAS

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ALTERNATIVE FUNDRAISING If you don’t have time to organise your own event or don’t feel able to take part in a CRY event or challenge, then there is no reason why you can’t still get involved! You can raise money for CRY easily through one or more of these schemes:

Another search engine which donates half of its revenue to charity.

lW aitrose & John Lewis – This chain makes community funding available through a scheme called ‘Community Matters’. If there is a store near you, please suggest CRY as one of the charities to benefit from this scheme. Visit www.waitrose.com and click on the “inspiration” link for more information.

If you would like help nominating CRY, please email ben@c-r-y.org.uk

cartridges to Cartridges4Charity. Visit www.cry.ink2cash.co.uk for more information.

le asyfundraising.org.uk – Raise money whilst doing your online shopping. Over 1,800 online retailers have signed up to this scheme including Boots, Amazon, BT, le Bay for charity – If you sell items on Currys, HMV, WHSmith and many more. eBay. It is possible to donate a percentage To create free accounts go to of the sale value to CRY. www.easyfundraising.org.uk Visit http://pages.ebay.co.uk/help/ l I nk2Cash – Another simple scheme sell/selling-nonprofit.html for where you can help CRY and the more information. environment by sending your old printer

There are several other companies that also have community schemes. As such you may well be able to nominate CRY at your local Asda or Nationwide Building Society branch and other stores. le asysearch.org.uk – An internet search engine. Use www.easysearch.org.uk (as an alternative to google/yahoo etc.) to search the web and 50% of the fees paid by their advertising can be given to your chosen cause. Simply go to the site and type CRY into the ‘who would you like to raise funds for’ box. Or you could use: lG ive as you live – www.giveasyoulive.com

lS tamps N All – Stamps N All is a specialist recycling company that passes on the proceeds from recycling donated items to the charities nominated by those recycling. For more information about what can be donated and where to send it to, please visit www.stampsnall.co.uk lG iveacar – Giveacar is a UK based fundraising organisation that specialises in donating unwanted and scrap cars to charitable causes throughout the world, including CRY. For more information on how to donate your car please visit www.giveacar.co.uk Full details of all these schemes and more can be found by going to: www.c-r-y.org. uk/category/fundraising/otherschemes If you notice any schemes that are similar to these, which you think CRY might be able to get involved with, we’d love to hear about it.

Please email ben@c-r-y.org.uk with the details.

D is for Dress Down Day At work, school or college, get people to pay to dress in their own clothes or come in fancy dress.

You could also have a prize for the best dressed!

F is for Film Night Ask friends round to watch a classic film on DVD, serve popcorn and drink – and request a donation for entry.

GIFT AID

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GIFT AID,PAYROLL GIVING AND MATCHED GIVING Gift Aid Gift Aid is a government scheme whereby charities can claim extra money on the majority of donations, at no cost to the supporter. When a donation is made by an individual who would like the donation to benefit from Gift Aid, we are currently able to claim 25p for every ÂŁ1 you give.

This is made possible by the person making the donation using a Gift Aid Declaration form, over the phone when making a donation or using a sponsor form if it is for a sponsored event.

Declarations of Gift Aid can also be made retrospectively on donations that have already been made and claimed up to 4 years later.

Gift Aid Declarations cannot be made on corporate donations; donations using company/business cheques; or donations made using CAF cheques.

For your charitable donation to qualify for Gift Aid it requires an individual and identifiable donor, who can satisfy the conditions for tax relief to declare their donation to be a Gift Aid donation. To qualify for Gift Aid you must pay an amount of income tax and/or capital gains tax at least equal to the tax CRY reclaims on your donations in the tax year. If you

pay tax at the higher rate you can claim further tax relief (please contact the CRY office to discuss this).

If you do complete a Gift Aid Declaration form, please notify CRY if you change your name or address while the declaration is in force. If, in the future, your circumstances change and you no longer pay sufficient tax to cover the amount CRY reclaims, you should cancel your declaration.

You can cancel the declaration at any time by notifying CRY and it will then not apply to donations you make on or after the date of cancellation or such date as you specify.

Gift Aid on Sponsorship Sponsor forms are provided for any event where you are planning to raise funds through sponsorship. These forms, give your donor the chance to fill in the relevant details needed for us to claim Gift Aid without having to fill in individual forms which would be time consuming for them.

Gift Aid on Collections/Raffles Unfortunately, we can’t claim Gift Aid on your donations if you have raised money in a collection box or a raffle.

With a collection box, this is due to each individual donation needing to have

E is for Exhibitions Charge an entry fee to display and sell items such as crafts, arts, books and toys.

a declaration form which, for a small donation such as loose change, is almost impossible for you as a fundraiser. With a raffle, you are purchasing a ticket, rather than making a donation so CRY is unable to make a claim here.

Payroll Giving Payroll Giving is a very effective way of giving financial support to a charity and you will automatically get tax relief at the higher rate of tax.

To make donations through the Payroll Giving scheme you will need to approach your organisation’s payroll department to check that they take part in the scheme.

If they do, then you need to give the full name of the charity – Cardiac Risk in the Young – and the reference number GYE 322 623.

If you pay tax through Pay as You Earn (PAYE) you can still make a donation to CRY through Payroll Giving. This includes

pensioners who pay tax on their pension through PAYE. Payroll Giving enables you to authorise your employer to deduct charitable donations from your pay before calculating PAYE tax.

If you require any help in setting up Payroll Giving with CRY then please call the CRY office on 01737 363 222.

Matched Giving Many organisations support their employee’s charitable efforts by matching the funds they raise up to a certain level.

This is a great way to increase the amount your event raises and can mean, in some cases, that the donation is doubled.

Speak to your employer to see if they offer such a scheme and find out what the procedure is if they do.

Often the company will need a letter of thanks to prove that you have raised the money for CRY which we will always be pleased to help with.

If you have any questions about matched giving or need help with an application, please via email ben@c-r-y.org.uk.

Charity of the Year Nominating CRY as the Charity of the Year is a great way to get everybody at your workplace, school or sports club involved.

The fundraising team at CRY can provide any help and support you might need to nominate the charity and fill in any application forms. Just email ben@c-r-y.org.uk to discuss this further.

If your organisation doesn’t currently raise money for a charity, it could be worth suggesting as it creates lots of opportunities for both the charity and the organisation.

F is for Film Night Ask friends round to watch a classic film on DVD, serve popcorn and drink – and request a donation for entry.

GIFT AID

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PLANING YOUR EVENT

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PLANNING YOUR EVENT Be Prepared If you’re planning a fundraising event for CRY, the first step is for you to consider how much money you would like to raise and what type of event you want to organise.

The ideas on pages 4 - 7 will hopefully help, or you may have come up with your own ideas. Two heads are often better than one so you might want to gather friends and family to come up with ideas. Creative and original ideas often make your event stand out and attract more participants.

Make sure that you choose an event that would interest you (or if you are doing it in memory of someone, something they would have enjoyed) to make sure you remain enthusiastic up to the event. Whatever your event, keeping it simple means it will be easier to organise. You need to give yourself time to plan your event, as it often takes longer than you think.

It’s All in the Detail Here’s a simple planning checklist: l T hink about a suitable venue for your event – remember that school halls and playing fields are often cheaper to hire than other venues and may allow you to provide your own refreshments. lM ake sure you are following any safety and legal requirements for the venue such

as an alcohol licence, public collection licence, public liability insurance, etc. l Draw up a budget and make sure the potential income exceeds any costs. How many people do you think will attend? l Will you need any more ‘hands on deck’ to help to sell tickets, promote the event or run the event itself? Ask friends to help you. l Choose a suitable date – be aware of school holidays, major sporting events, etc!

As soon as you have decided on all the details, you’re ready to tell everyone you know about the event. Make sure it is in everyone’s diary – and keep reminding them!

Publicising Your Event See the media training part of this booklet (page 29) for Support with Publicity section and all the ways you can help promote your event to make it a success. This includes tips on: l Press releases l Talking to the media l Social media l Promoting events on the CRY website

G is for Gaming Live stream a 24hr gamaton with your friends and ask for donations whilst playing.

FUNDRAISING GUIDELINES

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FUNDRAISING GUIDELINES There are many guidelines involving fundraising that have been set up to protect the charities, the event organisers and the general public. To avoid providing you with the whole booklet, we have identified some of the most useful ones to assist you with your event. If you have any questions or concerns about your event, please contact Ben by emailing ben@c-r-y.org.uk and he will be pleased to help.

For the full codes of practice regarding collections you can also visit the Institute of Fundraising page at: www.institute-of-fundraising.org.uk and look at the Codes of Fundraising Practice section relating to collections.

Promoting your Efforts & Using the CRY Logo We are delighted that our supporters would like to use the CRY logo to help raise awareness of their event and we are happy for the logo to be used on literature, posters and clothing.

We would ask that if you are planning to use the logo on the items you produce for your fundraiser, that you make sure you include our registered charity number 1050845, so as to comply with guidelines.

If you would like to request the logo for your event, please get in touch with the CRY Comms team by emailing nat@c-r-y.org.uk. We have the logo in a wide range of formats and will be pleased to help with your requirements, however we can.

We would also request that you do not use phrases such as “on behalf of” or “representing” CRY as you are operating independently from the charity with your own event and you do not fall under the control of the charity.

We would ask that if you are creating your own poster, you send it to us for approval first. You can send any promotional material to ben@c-r-y.org.uk for approval.

Raffles/Lotteries If you are holding a raffle and have a single prize worth more than £200 or you are selling tickets prior to the date of your event, you may need a licence. Please contact your local authority and look at the website www.gamblingcommission. gov.uk for more information.

These rules are designed to prevent people fraudulently using the charity’s name with the aim of their own personal gain, rather than to put genuine

H is for J isHair for Jump.

If you’re Take bravepart enough, in a sponsored get peopleparachute to sponsorjump. you to go for the chop! Or change the colour of your hair!

fundraisers off, so if you would like any help and advice please do get in touch with Ben by emailing ben@c-r-y.org.uk.

Collections We do not endorse door-to-door collections on CRY’s behalf due to concerns for your personal safety and that of local residents. Many people find doorto-door visits intimidating and we feel that there are more innovative and enjoyable ways to raise money for CRY. Street collections require a permit. You will need to contact your local authority for a full list of regulations that apply in your area. The local authority might also require you to get permission from the police. In turn the police will often ask for someone from CRY to send a letter or e-mail confirming that the charity endorses the collection.

Event collections require the permission of the owner of the premises (e.g. pub landlord, supermarket manager).

If you have any doubts about collections, please contact your local authority for clarification. If you do undertake some sort of collection, CRY can provide collection boxes and fundraising materials to support your efforts.

First Aid Cover For larger events that you are putting on, you may well require first aid cover. The amount required will depend on the size of your event. For guidance and advice on this, please contact your local council. If you require first aid cover, two providers you may like to try are St John Ambulance (www.sja.org.uk) or the British Red Cross (www.redcross.org.uk).

Temporary Event Licenses If you are having live music at your event you will need to apply for a temporary event licence if the event location is not already licensed. This also applies to any food that you may want to cook. Please contact your local council to apply for one of these licenses. The costs are usually quite reasonable and shouldn’t make too much of a dent in your fundraising efforts.

Food Hygiene If you are selling food to members of the public in a public location you will need to ensure the vendor/catering supplier is licensed. You can contact your local council for food hygiene regulations or go to the website www.food.gov.uk.

I is for Italian/Indian/Indonesian/Icelandic Invite friends to your local restaurant and raise money through selling raffle tickets or host a dinner party and ask for donation for entry

FUNDRAISING GUIDELINES

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ONLINE PAGE

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SETTING UP AN ONLINE PAGE Online donation web pages are now the most popular way to raise money for your event, whether it be a sponsored run you are planning, or a charitable ball.

CRY recommends setting up your online donation page through a not-for-profit company called Virgin Money Giving.

To set up your page, go to www.virginmoneygiving.com and click on ‘set up a fundraising page’.

You can then send an e-mail to friends, family and colleagues to tell them about your fundraising efforts and encourage people to visit your web page to make an online donation. You can also use the social media buttons to help promote your efforts. You can login at any time and make alterations and amendments to your page.

To notify you that the account is ‘live’, you will receive an e-mail confirming your personalised web address (e.g. http://uk.virginmoneygiving.com/ JoeBloggsMarathonrun).

Donations made via your page will automatically come directly to CRY. You will receive an acknowledgement letter from CRY for all donations made to the page once it has closed (not as a result of each donation).

You will also receive an email from the CRY fundraising team to thank you for setting up the page and offer our support with your efforts.

If you need any help in setting up your page, then please contact Ben in the CRY office on 01737 363222 or by e-mailing ben@c-r-y.org.uk.

J is for L isJump for Line Dancing Take partInvite in a sponsored friends to aparachute line dancing jump. evening with a donation for entry.

FUNDRAISING FOR A MEMORIAL FUND Whether you are setting up an online page or you are sending in the money from your event, if you would like your fundraising donations to be in memory of a particular person or for a memorial fund, please specify this person’s full name in the correspondence.

If you are raising money through an online page we will ‘tag it’ to make sure that all the money raised is allocated appropriately, but if there is any doubt, we will let you know in the introductory email that will be sent once the page is set up.

For any queries about memorial funds or if you would be interested in setting one up, please contact Lily in the CRY office by emailing lily@c-r-y.org.uk or calling 01737 363 222.

Fundraising For More Than One Charity or Project From time to time, supporters choose to raise money for more than one charity.

If you would like the proceeds of your event to be split between CRY and another charity, organisation or project, please ensure that the following guidelines are followed: lP lease advise us at the outset that the money will be split between two or more charities or organisations. lR equest similar quantities of promotional literature from each charity. lE nsure that sponsorship forms and any promotional items clearly state the names, logos (if available) and charity registration numbers of the benefiting charities, as well as details of what proportion will be going to each cause.

For example: “50% of the proceeds will go to Cardiac Risk in the Young (Registered Charity No. 1050845) and 50% to Cancer Research UK (Registered Charity No. 1089464)” It’s important that people donating to your fundraising efforts are know exactly what they are supporting.

It is possible with Virgin Money Giving to set up an online donation page for up to five charities with differing percentages if you would like to do your fundraising online.

If the other charity you are supporting has a similar purpose or campaign to that of CRY, such as SADS UK, we strongly advise that you hold separate events for each charity rather than a joint one to avoid unnecessary confusion for those who are donating. Fundraising is a wonderful way to raise awareness however fundraising for two charities with similar aims, but different objectives may confuse somebody who is not aware of either charity.

If you are not solely fundraising for CRY but are using CRY materials e.g. collection boxes/CRY merchandise, it is essential that all proceeds from these collections and sales are sent to CRY. After the event or activity, CRY will only be able to provide certificates and receipts for the amount received by CRY, not the total raised for all charities.

NOTE – You may not fundraise for more than one charity if you are taking part in a CRY led event (e.g.: Bridges Walk) or an event using a CRY place (eg: London Marathon).

FUNDRAISING

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WHAT YOUR MONEY CAN BUY

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WHAT YOUR DONATIONS CAN FUND l £ 5 Printing, posting and packing of a CRY information pack (sent out free on request)

l £ 2,500 10,000 SADS “When a young person dies suddenly” booklets

l £35 ECG test for 1 person

l £ 3,500 A screening day for 100 people, all having an ECG with immediate echocardiograms if required

l £ 35 First counselling call with CRY after a young person dies. l £ 250 ECG, follow up Echocardiogram and consultation for 1 person l £350 ECGs for 10 people l £ 575 20,000 CRY general information leaflets l £ 800 Referral of 1 heart to the CRY Centre for Cardiac Pathology for expert evaluation l £ 1,000 myheart support day, for young people living with conditions l £ 1,000 1,000 educational medical information DVDs (sent out free on request) l £ 1,500 Referral of 1 family member to the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology l £ 2,000 CRY bereavement support day (For 20 to attend)

l £ 5,000 10,000 medical information booklets, written by experts cardiologists l £ 5,000 Production of 20 presentations from the CRY Conference for the CRY website and ESC education platform for clinicians l £ 5,245 ECG machine (12 lead, capable of taking a 10 second reading) l £ 10,000 – Design and print 10,000 CRY update newsletters, for 1 mailshot l £ 14,250 Production of all CRY literature provided free of charge to raise awareness l £ 20,000 1 day of the CRY International Medical Conference (150 delegates) l 30,000 Portable Echocardiogram machine l £ 42,000 Fund 1 year of monthly weekend ECG screening clinics at the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology at St George’s Hospital, Tooting (screening a total 1,200 people)

Cardiology and Pathology Grants l £50,000 Fund 1 year of a Research Fellowship Grant at the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology l £155,000 Fund the CRY Centre for Cardiac Pathology for 1 year (300 specialist pathology investigations)

K is for Karaoke Invite friends to the pub and charge them to sing their favourite tune. Or you could use a game such as Singstar at home.

Appropriate clincial shot to go here?

REPRESENTING CRY

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REPRESENTING CRY AT YOUR EVENT We can help you raise awareness of the charity at your event in the following ways: Representatives around the country to lL iterature/Posters support our fundraisers’ efforts. These CRY has a vast array of literature and Representatives are volunteers who posters to help you raise awareness of CRY and young sudden cardiac death at have chosen to donate their time to your event which is all free of charge, help support CRY. The Representatives available on request. are able to attend events to speak to audiences, answer questions, accept lF undraising Materials cheques and generally represent CRY. Collections boxes, banners, sashes Without their support we would not be and other items are all available for our able to attend as many events as we supporters to borrow to help promote currently can and we are very grateful to and run their event. We do ask that these them. items are returned so they can be used for future events.

If you would like to request the attendance of a Representative at your event, please lM erchandise email your interest to sue@c-r-y.

As well as selling merchandise to org.uk and Sue will send you a form supporters, we also offer it on a sale to complete with your requirements or return basis to our supporters who and, once completed, will search for are holding events. This helps keep the somebody suitable. Unfortunately as our costs down for the event and avoids the Representatives are volunteers, we cannot organiser having merchandise leftover guarantee their attendance at your event, at the end of the event that they have but with enough notice (preferably more to keep. To discuss sale or return than a month) we will certainly aim to requests for your event please email find somebody. ben@c-r-y.org.uk. The literature, posters, fundraising materials and lV ideos merchandise can all be found on the If you don’t feel a representative is order form that is included with this pack. suitable for your event, or there isn’t one If you would like to request any items available, you may consider showing a please fill in the form and post it back CRY video to your audience. CRY now has to the CRY office or send it via email to many useful and informative videos that cry@c-r-y.org.uk and we will arrange can be found on our YouTube channel for the items to be sent out to you. www.youtube.com/cryvideos. If you need any help to display these, please lR epresentatives email nat@c-r-y.org.uk.

CRY is delighted to have a network of

L is for Line Dancing Invite friends to a line dancing evening with a donation for entry.

PATRONS

PATRONS

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PATRONS CRY is very fortunate to have an impressive array of Patrons from a variety of sporting, entertainment and medical backgrounds. You can see our Patrons and their support of CRY by visiting www.c-r-y.org.uk/about-us/patrons.

Attending CRY Supporter Events As CRY has continued to grow, so have the number of supporters’ events, which is fantastic news. This does, however, mean that we are now receiving an unprecedented number of requests for Patrons to attend these events.

If you would like representation from CRY at your event please refer to the section on Representatives on page 20.

If you would like to discuss the policy or our Patrons and their involvement with CRY, please email rebecca@c-r-y.org. uk. We are always looking for new Patrons to help raise awareness of the charity, and so if you feel you know somebody who is in the public eye who will be suitable for our target audience, please let Rebecca know.

CRY Patrons already do a great deal to support CRY both in the public eye and behind the scenes and are asked to get behind, attend or add their names to many major CRY-led events and awareness campaigns each year.

Their support is really important to CRY and whilst we would want to be able to make requests to them for all the individual events we are asked, this is just no longer possible for us. We hope you will understand why we are no longer able to assist with requests for Patron attendance at CRY supporter’s events and we would appreciate it if you did not approach CRY Patrons directly to support your event.

M is for Music If you having a party use Guilty Pledgers and ask your guests to donate to add their favourite tunes to the playlist.

“YOUNGSTERS ARE DYING NEEDLESSLY – WE CAN AND MUST CHANGE THINGS.” SIR IAN BOTHAM OBE

ONCE COMPLETED

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WHAT TO DO ONCE YOU’VE COMPLETED YOUR EVENT Paying Your Fundraising Money to CRY lB y Cheque: send your cheque made out to ‘Cardiac Risk in the Young’ or ‘CRY’ to: Cardiac Risk in the Young Unit 1140B The Axis Centre Cleeve Road Leatherhead KT22 7RD Please ensure that you enclose a brief note stating how the money was raised, and if it is in memory of anyone. If you did fundraise in memory of someone, please write the person’s name on the back of the cheque. lB y Debit or Credit Card: Go to www.c-r-y.org.uk/donate to make your donation. If you can’t access the website you can call the CRY office on 01737 363222 and speak to one of the CRY team to make your payment.

Your payment will be processed the same day, and you will receive your receipt issued via email. This will be followed up with a personalised thank you letter in the post acknowledging your fundraising efforts. lB y Direct Payment into Our Bank: if you have a branch of Lloyds nearby, especially if you have cash, you may prefer to pay directly into the CRY bank account. We can send you a

CRY paying in slip to do this, which means that we will be able to recognise your deposit by the reference number on our bank statement. lB y BACS Payment (Bank Transfer): If you need to make a BACS or internet payment, the details are below: Bank Name & Address: Lloyds Bank plc, 64 High Street, Epsom, KT19 8AT Sort Code: 30-93-08 Account Number: 00422047 Account Name: Cardiac Risk in the Young If you chose BACS/internet, please email cry@c-r-y.org.uk giving your contact details, how much you have paid in, how the money was raised, and if your fundraising was in memory of anyone. lV ia the CRY Website: Donations or fundraising totals can be paid to CRY through the CRY website. If you go to www.c-r-y.org.uk/donate you can make the payment and give an explanation of your fundraising efforts to ensure that we correctly allocate and acknowledge your efforts (donations under £100 will receive an email acknowledgement rather than a posted letter).

Returning Leftover Fundraising Materials We would be very grateful if you could send back any fundraising items you have leftover so that we can use them again in the future for other fundraisers and save

N is for Naughty Habit Whatever your naughty habit, give it up with a little sponsored help from your friends.

the charity some money. This can include literature, posters, fundraising materials and any merchandise that you have had on a sale or return basis.

Please send any items back to: Cardiac Risk in the Young Unit 1140B The Axis Centre Cleeve Road Leatherhead KT22 7RD Please include a note explaining who they are from and which event so that we can make sure we have a record (especially for fundraising aids and sale or return merchandise) and don’t chase you for missing items in the future.

Fundraising Write-ups We would love to share your stories with the CRY office and all of our supporters.

Your efforts to raise funds can inspire others and help people with their events.

We love to see new, innovative ways to fundraise as well as the more popular events and it is wonderful to be able to show others all of your hard work and

effort. To get your fundraising on to our website and into our Update magazine, please send some of the best photos from your event and a write-up (it doesn’t have to be a long piece, just a paragraph or two about how the event went and the response from those attending) to digital@c-r-y.org.uk or via our website here www.c-r-y.org.uk/upload.

A Big Thank You! CRY relies on the fundraising efforts and donations from its supporters to be able to fulfil our ambitious aims. We are so very grateful to you for your hard work in raising funds and awareness for CRY and hope that you will enjoy it and become regular fundraisers for CRY.

Feedback If there is anything else we can do to help, or you feel there is anything more that we should be doing to support our fundraisers, please email ben@c-r-y.org. uk or call 01737 363 222. We would love to hear your feedback!

Q is for NightDay Challenges O isQuiz for One

Ask a local pub, club or restaurant to host the night, charge per team and choose a theme for the Have a day-long sponsored silence! questions – e.g. the 80s or sports.

ONCE COMPLETED

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ABOUT CRY

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ABOUT CRY

CRY Centre for Cardiac Pathology (CRY CCP) Understanding the cause of death

CRY was the first organisation to draw attention to the range of conditions that can cause young sudden cardiac death (YSCD).

CRY’s Vision: Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.

myheart Network Support for young people diagnosed with heart conditions CRY’s myheart Network provides help, support and information to young people who are coping with the diagnosis of a heart condition. Regular meetings are held where members can share their experiences and put questions to an expert cardiologist. myheart.org.uk

P is for Penalty Shoot-Out Charge per kick and have a prize for the winner.

Following a young sudden death, it is often not possible to test other family members who may be at risk from the same cardiac abnormality, until a cause of death is determined. The CRY CCP offers a fast-track cardiac pathology service for bereaved families. cry-ccp.org.uk

ABOUT CRY

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Research Furthering our understanding of young sudden death CRY’s screening programme not only identifies people at risk but also provides data for vital research into cardiac abnormalities. CRY Consultant Cardiologist Professor Sanjay Sharma directs one of the world’s leading centres for research into conditions causing sudden death syndrome – the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology.

Cardiac Screening

Bereavement Support Offering help and support to affected families

Families often seek support following a young sudden cardiac death. CRY maintains a network of trained counsellors with personal experience of a similar tragedy and provides opportunities for bereaved families to come together at meetings across the UK.

Identifying young people at risk

c-r-y.org.uk/bereavement

A simple way to diagnose most cardiac abnormalities is a quick, painless and non-invasive test called an ECG which records the electrical activity of the heart.

If a more detailed image is required, an ultrasound scan of the heart – called an echocardiogram – can be taken. Any person between the ages of 14 and 35 can book a place at a CRY screening event. testmyheart.org

Q is for Quiz Night Ask a local pub, club or restaurant to host the night, charge per team and choose a theme for the questions – e.g. the ‘80s or sports.

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DONATING TO CRY There are many ways you can donate to CRY: lB y Credit/Debit Card Make a donation on the CRY website by going to www.c-r-y.org.uk/donate. lB y Cheque Send a donation by post to the CRY office: Cardiac Risk in the Young Unit 1140B The Axis Centre Cleeve Road Leatherhead KT22 7RD Please make cheques payable to “CRY”. If the donation is for a memorial fund, only put this information on the back of the cheque. The bank will not accept cheques with this information in the payee section.

lB y Text Message Text “SCREEN” to 70080 to donate £5 to CRY. lD irectly from Your Wages see page 10. lL egacy Donation Please contact Ben in the CRY office by email ben@c-r-y.org.uk or by calling 01737 363 222 and he will assist you with your support. lG iving Your Time We are always very grateful to our supporters who are able to volunteer their time. If you would like to get involved with CRY, please contact Cara by emailing cara@c-r-y.org.uk or by calling 01737 363 222.

R is for Race Night Buy a DVD package with instructions on how to organise a race party, get your friends together and get ready to back a winner for CRY!

CRY IN THE MEDIA, TRAINING & SUPPORT GUIDE The Media – How to Make It Work for You! Introduction The CRY Press Office is managed by the expert team at Trinity Public Relations, who have been working with Alison Cox and many of CRY’s staff (from fundraising and events, through to screening and bereavement support) for over 10 years.

During this time, the team has developed a wide and in-depth understanding of the charity and appreciates how vital it is to work closely with the media and to keep CRY’s name and reputation at the forefront of the news agenda.

KEY CONTACTS: All media (national and regional) and general awareness-raising: Jo Hudson 020 7112 4905 Out of hours 0770 948 7959 / 7960 jo.hudson@trinitypr.co.uk

Fundraising & Events:

As such, CRY’s Press Office is available to answer journalists’ questions 24/7 about all issues relating to sudden cardiac death in the young and the importance of cardiac screening and research.

Ben Robinson 01737 363 222 ben@c-r-y.org.uk

Trinity PR is also here for you!

Nat Jenkins 01737 363 222 nat@c-r-y.org.uk

This guide will help you as you continue to generate awareness of CRY through the amazing work you are doing. We also hope it will signpost you to the support and advice that is always available to you via Jo Hudson and the team at their head office and to ensure you feel confident when speaking to the media.

Website/Social Media (e.g. Facebook/Twitter):

S is for Sports Competition Set up a tournament in your local park – try football, tennis or skateboarding.

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MEDIA SUPPORT GUIDE

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OVERVIEW OF THE MEDIA Overview of The Media As a “consumer” and member of the public, you will be aware of the many different types of media in the UK – and the ever changing ways in which we can all access the news. When CRY first launched, it was all about the nationals, glossy magazines and a daily or weekly paper packed full of local news.

But, things have changed… news is global, “rolling” and available around the clock on your smartphone, tablet or PC (as well as the newspaper that may well still drop onto your doormat every morning!).

ALL media channels are vital to us, as we strive to raise awareness of CRY. So – as a quick check list – here’s a brief overview of our key media targets: lN ational newspapers (broadsheets and tabloids)

What Is News?

We believe everything we do at CRY in terms of fundraising and awareness is newsworthy – but we do have to be realistic about how many times we can hit the headlines, especially when targeting the same papers or journalists in the same area.

Here are some basic tips on how to

lR egional newspapers (not as popular as they were, but still valued in many parts of the UK, with growing online news following) l Consumer magazines l Trade magazines l Television lD ocumentaries or special interest programmes l Radio l I nternet (Many regional newspapers now serve most of their audience via their website) Social media l Forums and blogs l Facebook l Twitter l YouTube l Instagram l Pinterest increase the chances of your story being “picked up”: Local interest: it’s likely that you will know the title of your top local papers better than anyone – but it is always useful to check that the exact location of your screening or fundraising event comes within the exact catchment area of your paper or they just won’t cover it! Look online or give the switchboard a quick call.

T is for Themed Parties From reggae and 70s to barn dances, arrange food, music and charge people for tickets.

Human interest: the story must revolve around people in some way and, with CRY, the story will inevitably always feature the case history of a family or individual. However, this often means that a journalist will want to interview you specifically about your own personal experience, which you might find very hard to talk about.

Visual interest/is there a good photo opportunity?: do call or email your local paper to invite a photographer along but don’t be disheartened if they say no – picture desks on local papers have very few staff so it will simply be a question of who is available on the day. Picture desks are usually delighted if you can email in a digital photo taken on your camera or phone.

If you ever feel unsure or uncomfortable, please do not hesitate to contact Jo in the CRY Press Office for help or advice.

However, don’t forget to list everyone in the photo from left to right – and try to avoid large group shots or line ups.

Current interest/topical/ “new news”: wherever possible, do give the journalist as much warning as you can. And, if you are sending over follow-up information or pictures, do make sure you don’t leave it any more than a couple of days (ideally within 24 hours for a daily paper, otherwise it becomes old news very quickly).

W is U forisWine Tasting for Unfashionable

The ‘X’ Factor: celebrity support won’t make or break your story but there’s no denying it can create a little bit of extra interest! If you already have a contact with a local celebrity – or even a “world famous” one – then by all means, please do invite them along and, if possible, ask them to wear a CRY t-shirt. Please try to take a few photos as we’d love to add them to our website, Facebook page or Twitter feed.

Ask yourIt’s local wine or supermarket recommend or sponsor wineThink selection and thenoutfits, time to merchant swallow your pride and beto deeply unfashionable for aaday. mismatched gather your friends for a terrible fun evening.

Charge for entry. clashing prints, hats, sandals with socks.

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BE PROACTIVE

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BE PROACTIVE AND GIVE IT A GO! The CRY Press Office has a range of template press releases which are always kept up to date with key messages and information, We are always happy to tailor it for your specific event and advise you on where and when to send it.

Ideally, a press release should follow an “inverted pyramid” structure, with the most important information at the top, followed by the remaining facts in order of importance:

If you do want to tackle writing your own press release, here are a few basic guidelines to help you stand out as much as possible (as news desks will receive a huge amount of press information about local events every day).

l T he overall message or story should then be summarised in the opening paragraph.

Essentially, a well-written, effective press release should be concise and contain as much relevant, accurate information as possible, especially concerning times, dates, names and key facts. It should then answer the following questions about a story or event:

Who?

What?

lA short, snappy title/headline should give an overview of the story.

l T he following paragraphs should offer more in-depth information to ensure that the journalist can grasp your story within a minute of starting to read it. lQ uotes from relevant parties perhaps from you? - and the CRY Press Office can also supply a quote from Alison Cox MBE or Dr Steven Cox, Director of Screening. lC ontact details to supply further information. lA vailability of pictures after the event (if applicable).

Where?

When?

How?

Why?

V is for X isVolunteering for Xtreme Sports Or a helping Takehand part in and one doofjobs ourfor skydives, people abseils, in returntreks, for online bike rides, donations. or white Whether water it’s rafting bag via packing our fundraising at your localchallenges. supermarket or offering to clean a neighbour’s car.

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Reactive PR: Letter To Editor Young sudden cardiac death is a very emotional issue and there may be occasions when you read an article in a newspaper or magazine tha t you would like to respond to, either agreeing or disagreeing with the author’s point of view .

The CRY Press Office is here to advise you on the most effective ways to get your letter placed in a national or local newspaper but we are also very happy for you to contact the relevant publication independently.

Before beginning to write you should: lE mail/call the publication to check that they will accept letters or whether it is too late to respond to a past article.

Y is for Yoga-thon W is for Worldwide

lF ind out the correct email address to send your letter to. Letters should always be addressed to the editor. lE nsure your letter clearly addresses the issues raised in the original article. lC heck your letter is not too long; some published letters are only between 50 and 80 words. l Make a follow up call to check that the letter has been received and whether it is going to be published.

This will help to keep your letter in the minds of the editorial team.

If your letter is not published, it is a good idea to ask why so that you know for future reference.

See if a local yoga instructor will teach for as long as possible – people can donate to take part.

Get inspired by culture, food and local traditions from around the world and host a themed night.

Have a prize for the last person to drop out.

TIPS FOR INTERVIEWS

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our fundraising

TOP TIPS FOR MEDIA INTERVIEWS 1. Always check if the interview is going to be live or pre-recorded.

2. Before the interview begins, ask the reporter/presenter what their first question is going to be. This will help you prepare your answer and avoid feeling lost for words.

3. Preparation is vital: before the interview, make a note of the three main points which you need to get across.

Stick to your message during the interview and don’t waste time digressing (interviews are normally only a couple of minutes long). Make sure you’re fully briefed on the subject of the interview. (see CRY’s key messages on page 35).

4. Keep your sentences short and sweet.

If it’s a pre-record, it is likely that your responses will be edited down into 10 – 20 second soundbites.

5. Relax, speak slowly and clearly – don’t be tempted to rush through the interview to get it over with.

8. Where possible, use real life examples to illustrate your answers. This makes it sound more believable and will really make the audience listen.

9. Don’t be afraid of the interviewer – remember you’re in charge! Jump on any untruths and don’t let the interviewer lead you into areas you don’t want to discuss.

10. Practice makes perfect! It will become easier with every interview and if you can, try to rehearse your techniques.

Please let the CRY Press Office (or your own specific contact at the charity) know before you take part in any interview.

If you have any questions about a forthcoming interview and would like advice, then please do call the CRY Press Office, where we will be happy to talk you through tips and key messages – as well as running a practice interview over the phone if you think that will help.

6. Don’t think of the potential size of your audience as this can be daunting and make you nervous. Pretend you’re having a one-to-one conversation with the interviewer.

This is a useful exercise we go through with all our CRY Research Fellows and media spokespeople – and is a really simple way of “taking control” of a media interview and not allowing a journalist to ask you questions you don’t want to answer.

7. Keep it simple and jargon free. Don’t try to memorise any catchphrases you’re not familiar with as you might get tongue tied if you can’t repeat it word for word.

If you have any queries about these techniques or would like to practice some examples (over the phone) please call the CRY Press Office.

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6.

KEY MESSAGES

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KEY MESSAGES l Every week in the UK at least 12 apparently fit and healthy young people die of undiagnosed heart conditions. l In 80% of cases of young sudden cardiac death (YSCD) there are no prior symptoms of a heart defect. l CRY’s mission is to prevent young sudden cardiac death through awareness, screening and research, and to support families after a tragedy. l CRY promotes the choice for screening.

All people aged 14 to 35 should have the choice to be screened. www.testmyheart.org.uk. l 1 in 300 people will have a potentially life- threatening heart condition. l CRY’s screening programme is heavily subsidised and all of the publicly available screenings are funded by CRY families, these are in memory of someone who has died a sudden cardiac death, meaning CRY’s screenings are free for the public to attend. www.testmyheart.org.uk.

l CRY’s screening programme tests elite Olympic athletes; England Rugby Football Union and all Premiership Rugby Football Union clubs; Great Britain Rugby League and Super Rugby League clubs; Lawn Tennis Association players; County Cricket clubs and some Premier League and Football League Clubs. l CRY’s screening programme is overseen by the Charity’s Consultant Cardiologist, Professor Sanjay Sharma (St George’s NHS Trust.)

Bridging Techniques Helping you move the conversation on from a negative or unhelpful question

“Let’s not forget that…”

“The most important thing is…”

“I don’t think that’s so important…

BUT…..”

“You may say that, but what CRY really believe is…”

“That’s not the case…”

Y is for Yes Day Take on a ‘Yes day’ challenge where fundraisers have to say ‘yes’ to everything in exchange for donations.

Head Office: Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD Tel: (01737) 363222 Email: cry@c-r-y.org.uk Website: www.c-r-y.org.uk Registered Charity Number: 1050845 Facebook.com/CardiacRiskintheYoung Twitter – @CRY_UK

Z is for Zzzzzz...

Get people to sponsor you to stay in bed for as long as possible – or wear your PJs all week (to school, work etc!).