y t e i c o S e s a e s i D s ’ n o s Parkin
k c a p g n i s i a fundr
www.parkinsons.org.uk
Thank you for supporting the
Parkinson’s Disease Society
Here’s what you can do With your help, we can continue our work to support people with Parkinson’s and their carers, and achieve our goal of a future free from Parkinson’s. This pack contains everything you need to help you get started with your fundraising – if you have any questions or if we can help in any way, please give the PDS Events team a call on 020 7932 1342 or email events@parkinsons.org.uk
“I’m always so touched and impressed by the efforts our supporters go to in raising money for the PDS – without you we couldn’t continue the vital work that we do. We’ve made excellent progress in research and improvements in the care and treatment of people with Parkinson’s, but there is so much still to be done to prevent and help alleviate its distressing effects. Thank you so much for your support.” Jane Asher, PDS President
About the
Parkinson’s Disease Society
The Parkinson’s Disease Society is entirely funded by voluntary donations. That means people like you raising funds to support us – and it means we can continue our work for all people affected by Parkinson’s. Since 1969, the Parkinson’s Disease Society has been working with and for people with Parkinson’s and those close to them. We have over 30,000 members, more than 35,000 supporters, and over 330 local branches and support groups across the UK. And we have you – welcome to the team! What is Parkinson’s disease? Parkinson’s disease What are the symptoms of Parkinson’s? is a progressive neurological condition – for which there is
There are three main symptoms of Parkinson’s.
currently no cure.
Tremor – although this is a main feature of the condition,
Parkinson’s is caused by the loss of cells in the brain that
up to 30% of people with Parkinson’s do not have
produce dopamine – a chemical that allows people to
a tremor.
perform smooth, co-ordinated movements by transmitting
Slowness of movement (bradykinesia) – people with
messages between nerve cells and muscles. When a high
Parkinson’s may find that they have difficulty starting
percentage of these dopamine-producing cells is lost, the
movements or that performing movements takes longer.
symptoms of Parkinson’s appear.
Stiffness or rigidity of muscles – this can affect many everyday tasks and can sometimes be quite painful.
There are 120,000 people with Parkinson’s in the UK. There is no cure. “Thanks to the PDS, I can focus on an important area of Parkinson’s research
that has not been fully investigated.” Dr Wilkinson, recipient of a PDS Career Development Award, Queen’s Square, London
For more information call 020 7932 1342 or email events@parkinsons.org.uk
“When I looked at the PDS website and saw all the help that’s available, I wanted to do something positive. I decided to go on their Namibia trek and as part of my fundraising I organised a Party for Parkinson’s at a local club. My family and friends helped out and we had a lot of fun!” Paul Martin, PDS fundraiser
Where your money goes Research We have invested over £40million researching the cause, prevention and cure of Parkinson’s – as well as looking at ways to improve treatments and the lives of those with the condition. Information We provide advice and information on all aspects of Parkinson’s, including drug treatments, surgery, therapies, social and health care rights, benefits, insurance, employment, driving, holidays and respite care. Advice We have a freephone Helpline (0808 800 0303) staffed by nurses and specialist advisors offering information, support and a sympathetic ear. We currently answer around 20,000 calls per year. Education We provide education to health and social care professionals to increase their understanding of this complex condition.
“When I called the Helpline, I had all my questions answered by someone who was comforting and easy to talk to. This made such a big difference. Knowing that the PDS exists and can support you is hugely important.” Harry, North East Wales Branch member
£2 covers the cost of sending out a free copy of our DVD ‘Being there’ to someone newly diagnosed with Parkinson’s.
£12 will enable one of our Support Workers to give expert advice on benefits to a person with Parkinson’s.
£15
will pay for a Parkinson’s Disease Nurse Specialist to spend an
hour working with someone with Parkinson’s.
£25 will pay for a PDS Helpline nurse to take calls for one hour. £150 will fund a Parkinson’s Disease Nurse Specialist for a day. £1,000 will fund a cutting edge research project into Parkinson’s disease for a week.
www.parkinsons.org.uk/events
Fundraising:
getting started
There are lots of ways you can raise money for the PDS. Here are some tips from other fundraisers to help you get started. Never miss an opportunity Make sure that you have a sponsorship form with you all the time; you never know who you’ll bump into. Also, try to collect cheques and donations from people up front so you don’t have to
What is Gift Aid? The Gift Aid scheme is really
chase them afterwards!
simple. If your sponsors are UK taxpayers and agree to
Sponsorship forms Make sure the first donation at the top of each of your sponsorship forms is a generous one – people tend to match the donations already on the form.
Gift Aid their donations to the PDS, we can claim back the tax they have paid on that donation. This means we can increase the value of your sponsorship by approximately a quarter – more money for the PDS at no cost to you or
Tell everyone If you have a personal reason for raising
your sponsors.
money for the PDS, tell people about it. You’ll be surprised
Please note that the following conditions apply to amounts
by the support you receive.
that we can claim Gift Aid on: • the person donating the money must have paid income
Sponsorship forms
dos & don’ts
Do
use an official PDS sponsorship form. Our form
or capital gains tax equal to, or greater than the amount we will claim.
We can’t claim Gift Aid on: • the price paid for an item, e.g. goods from stalls or raffles • the price paid for tickets or the right to attend an event
is designed with all the necessary legal wording to allow
• any deposits or registration fees
us to claim Gift Aid on your sponsors’ donations. If the
• donations made by close family members for some
sponsorship form does not have the official Gift Aid
adventure fundraising events such as our overseas
statement we will not be able to make the claim to the
challenges. In these cases we will make sure you
Inland Revenue.
receive all the information necessary to allow you to take
Do photocopy the blank sponsorship form or just
advantage of the Gift Aid scheme.
give us a call if you need more.
Do send your completed sponsorship form in with your money. We can’t claim the Gift Aid without the form.
Don’t create your own sponsorship forms; just let us know if you need extra copies.
For more information call 020 7932 1342 or email events@parkinsons.org.uk
Our top tips for making the most of your Justgiving page Get personal Make your page as compelling
What is Justgiving? Justgiving is the 21st-Century version of the sponsorship form! At www.justgiving.com you can set up your very own webpage for free, add all the details of your event and
as possible by adding your own photograph and text. Explain what you’re doing and why it’s so important to you.
then email a link to all your friends, family and colleagues
Set an example It can be intimidating to be
– who can sponsor you quickly and securely online.
the first person to donate to a blank page, so before sending an email to your entire address book, make
How to set up your page
sure you ask your close friends and family to donate.
All you need to do to set up your page is visit:
People also tend to match the donations that already
www.justgiving.com/parkinsons/raisemoney
appear on the page, so get your most generous
then just click ‘create your page’ and follow the instructions.
supporters at the top of the list!
Why we love Justgiving
Keep your page up to date and remind people it’s there Change your picture, add some
• Justgiving will send an automatic thank you email to everyone who donates via your page.
new details about how your training or planning is going,
• You will receive an update email for every donation
or write about how it all went after the event – your
made on your site, making it easy to keep track of
webpage can be a great way to keep your supporters
your sponsorship total.
feeling involved!
• You can raise money from friends and family you might
Use your email signature Set up an email
not see very often.
‘signature’ that will automatically appear at the bottom
• You don’t have to worry about catching people with full
of all your messages. Add some information about your
wallets or chasing them for cheques after your event.
fundraising and include a link to your Justgiving page.
www.parkinsons.org.uk/events
Organising your own
fundraising event
What? Who? Where? How? When? You can do almost anything you like, to support the PDS! But no matter what you choose to do, planning is very important and there are some key points to consider when organising your own event. What are you going to do? Keep it simple –
There are many ways of contacting people – posters,
often the most straightforward ideas are the most
local press releases, email, and newsletters…
successful. If your event goes well, you can always repeat
Where are you going to hold your event?
it and build on it next time round. It is easier to combine your fundraising with something you love doing. If you are a member of a football team, you could organise a five-a-side tournament. If you enjoy going to car boot sales, why not ask friends and family to donate items for you to sell at a stall? If you are always having friends round for dinner, you could hold a Party for Parkinson’s!
If you want to hold the event in a hired hall or building, it is a good idea to meet with the manager or owner before you start organising the event. If you let them know that you are fundraising for the PDS, they may even donate the use of the venue for free! You need to consider how many people are going to attend and what facilities you need to provide for them – catering, car parking, disabled access?
How are you going to raise money from the event? It is important to plan your budget from the start. Make a list of everything you will have to pay for, what it will cost, and how much you think you can raise. Ensure that you will make more money than you spend. If you are organising a large event, speak to local companies about donating items or providing sponsorship.
When are you going to have your event? Make sure that your event doesn’t clash with anything else, or use other events as your inspiration, e.g. a football-themed party on the day of the FA Cup,
After the event Make sure that you send thank you letters to everyone who came along or supported you and, if appropriate, let them know how much was raised. We’d love to hear how everything went too,
or a tennis tournament during Wimbledon fortnight.
so don’t forget to give the Events team a call or send
Who is the event aimed at? Think about
as we’re always on the look out for good pictures of
whether the event is just for friends and family, or if you
us an email afterwards. Please send us your photos our fundraisers!
would like to reach a wider group of people. If so, think about who you might like to invite, for example, local football or rugby clubs, youth groups or families?
For more information call 020 7932 1342 or email events@parkinsons.org.uk
The legal bits
Alcohol Some police and local councils now require
Holding a raffle There are different types of lotteries or raffles, and there are specific rules and regulations for each. The easiest way to avoid any complicated issues is to follow these simple tips: • Hold your raffle draw during your event. • Only sell the tickets to guests at the event. • Don’t spend more that £250 on raffle prizes, but remember if the prizes are donated there is no limit on the value – so go and ask shops and businesses in your area for their support. If you would like to organise a larger raffle or sell tickets to the public, please do give us a call to make sure you stay within the necessary rules.
licences for raffles and lotteries with alcoholic prizes. Either check with your local police station or avoid alcoholic prizes unless you have a licence. If you are intending to serve alcohol at your event, you will need a licence. For more information on how to gain an ‘Occasional Permission Licence’, contact your local police station.
Health and safety Safety is the most important thing to think about. The PDS cannot support any event that puts people at risk. You must consider the safety of yourself, volunteers and the general public above all else. You may need to carry out a risk assessment before your event to identify possible hazards, but we can offer you more advice, so please give us a call!
Public collections Holding a collection can be a great way of raising money and awareness of the PDS and we can provide collection tins and permission cards. If you want to hold a collection in a public place, please contact us so that we can make sure it doesn’t clash with any other local collections by our supporters. If you want to have a collection in your town centre or high street, you will need permission from your local council and you must contact them well in advance – be aware that this type of collection is very popular and there may be a waiting list.
Insurance Some venues may require you to have public liability insurance. The PDS has public liability insurance that will cover both the Society and its members. If you would like a copy of our certificate, please give us a call. The PDS also has personal injury insurance, which would cover anyone injured at an event, subject to there being no evidence of negligence. Negligence could be claimed if it was discovered that the injured person was unsuitable for the event, insufficiently trained or was supplied with inadequate or faulty equipment for the task being carried out.
If you want to hold a collection on private land – e.g. in a pub, train station or sports club – you need the permission of the owners. Bear in mind that big supermarket chains have their own requirements and it can take a while to be offered a collection time.
www.parkinsons.org.uk/events
How do I
promote my fundraising?
To make the most of your fundraising, let as many people know about it as possible. Put up posters in shops or clubs, speak to your local newspaper or radio station, or ask your friends to pass on the message. Not only will you get more people to support you, but you will also raise the profile of the PDS and awareness of Parkinson’s. Preparation Reading local papers/events guides/
Celebrities/ VIPs Asking local celebrities to endorse
parish magazines and listening to, or watching, local
your fundraising can often attract support and media interest
broadcast programmes is excellent research for deciding
– and it can give a great boost to your fundraising too.
which media to contact. Does the paper/programme have a regular slot that publicises events?
How to contact the media When you have decided which papers and programmes to target, find out who to contact. When you call a paper or broadcaster,
High profile, nationally recognised celebrities are often difficult to contact, so if you know a local footballer, newsreader, radio DJ or your MP or Mayor, why not approach them? They can help in a number of ways: they might attend your event, provide a quote for your
simply say that you want to talk to someone about a
press release or even make a donation.
forthcoming local charity event and they will put you
Remember, many celebrities receive a huge number of
in touch with the right person. The best way to get your
requests for their support and always need to be contacted
information across to a journalist is to prepare a press
well in advance. To make your request stand out, be sure
release. If you can enclose a photograph as well, this
to include all the details of the event, a clear suggestion
will help convey your message.
of what you would like them to contribute, and why you
Please remember to mention the PDS website
are fundraising for the PDS.
www.parkinsons.org.uk and Helpline 0808 800 0303
If you would like any help or advice on how to promote
when talking to any journalist.
your fundraising in the media, please contact the Communications team on pr@parkinsons.org.uk or call 020 7963 9370. Please let us know of any media coverage you receive and how you went about it – you could provide some top tips for other fundraisers!
For more information call 020 7932 1342 or email events@parkinsons.org.uk
Other ways
support the Society Membership is open to anyone with an interest in Parkinson’s. We have more than 30,000 members for whom the Society is the main source of accurate information on Parkinson’s and the issues that surround the condition. The more members we have, the louder our voice in the campaign for a better quality of life for people with, and those affected by, Parkinson’s disease. For more information on the benefits of membership and how to become a member of the PDS, please call 020 7932 1344.
eBay A great way to support our work is to sell unwanted presents and other belongings through ‘eBay for charity’. Almost anything can be sold on ‘eBay for charity’ and you can decide how much of the final sale price is directed to the PDS. For more information, please get in touch with our Events team on 020 7963 9319 or events@parkinsons.org.uk
Direct Debit Regular donations mean that the Parkinson’s Disease Society can plan ahead with our medical research programme and the provision of services for people with Parkinson’s, their families and carers. If you would like to give a small monthly amount straight from your bank or building society account, Direct Debits are easy to arrange. For more information on setting up a regular gift, please call our Donor Services team on 020 7932 1303.
Recycling Supporters of the PDS can raise money to help people with Parkinson’s and help the environment at the same time. Simply recycle your mobile phones and printer cartridges through the Recycling Appeal. Recycling just two printer cartridges could pay for the postage of a copy of ‘Being There’, our DVD for those newly diagnosed with Parkinson’s. For more information on recycling please call 020 7932 1357 or email events@parkinsons.org.uk
www.parkinsons.org.uk/events
Sending money
to the PDS
You’ve worked hard, had fun and done some fantastic fundraising – so here’s how to send us your money! Please send your money as a cheque All cheques should be made payable to the Parkinson’s Disease Society unless we advise you otherwise. We also accept postal orders and CAF (Charity Aid Foundation) vouchers or similar.
Don’t send cash through the post! Please bank any cash that you are given and send us a cheque for the amount. If you have used a collection tin, please ask someone to count the money with you as a witness before banking it.
Please include any completed sponsorship or donation forms with your money, so that we can claim the Gift Aid on donations.
We recommend that you send all cheques etc by recorded post You’ve worked so hard to raise it, and you don’t want to worry about it going missing!
Use the reply form at the back of this pack When sending in your donations, we ask that you use this form to help us with our record keeping. We want to make sure that the money you have raised is added to your personal fundraising total, and that we can send you a receipt and a thank you for all your hard work.
Please send everything to us at: Events Team Parkinson’s Disease Society 215 Vauxhall Bridge Road London SW1V 1EJ
For more information call 020 7932 1342 or email events@parkinsons.org.uk
Notes
www.parkinsons.org.uk/events