PSPA Fundraising Guide

FUNDRAISING GUIDE

Everything you need to know about how to fundraise and raise awareness for PSPA.

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WELCOME TO THE TEAM Thank you for joining #TEAMPSPA PSPA is the only UK charity dedicated to creating a better future for those affected by Progressive Supranuclear Palsy (PSP) & Corticobasal Degeneration (CBD).

Our work is important because people with PSP & CBD currently do not receive timely diagnoses or adequate support and care. With your help, we can continue our work to ensure the 10,000 people with PSP or CBD receive support and care that is coordinated, has continuity and is compassionate.

This guide offers lots of inspiration to help kick start your fundraising journey!

You will find helpful tips on how to organise a successful fundraiser, discover what support is available to you and how to get started.

We can’t wait to see what you achieve!

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HAVE AN IMPACT Thanks to the support of our dedicated fundraisers, we are able to provide essential resources including…

Carer’s Support Groups - Providing regular support groups to carers allows us to reduce isolation and increase the number of people accessing our services Awareness and Education - Fundraising helps improve public awareness and understanding of PSP & CBD Helpline Care Navigators – Having regional Helpline Care Navigators allows us to support those in need, and provide helpful resources and information Support – Our quarterly PSPA Matters magazine helps to provide the inspiration and support to enable families affected by PSP & CBD to live their best possible lives.

Research – By funding and promoting research into PSP & CBD, we are working to ensure that those affected receive a quick and accurate diagnosis, immediate treatment and consistent care.

“We know how emotional and physical caring for someone with the condition can be. Helping to progress research and awareness, all for my Gran, were my drive to start fundraising.” Ella McParland If you would like to know how to access any of the resources mentioned above, please contact our PSPA Helpline for more information. helpline@pspassociation.org.uk or call 0300 0110 122

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LET’S BREAK IT DOWN £25

Could cover the cost of a GP Guide to PSP & CBD and Red Flag posters for a local surgery, aiding faster, more accurate diagnosis and encouraging referrals to specialist neurologists

£100

Could go towards funding a Family & Friends day for people living with PSP & CBD ensuring they know they are not facing the disease alone

£300

Could provide a grant to someone living with PSP & CBD for equipment that will improve their quality of life

£1,000

Could enable PSPA to invest further into research of PSP & CBD, to help us better understand the conditions and how they progress

If you want to make a difference and donate to PSPA, scan here!

Or get in touch with our friendly team today, simply email fundraising@pspassociation.org.uk or call 01327322414

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WHERE TO BEGIN Fundraising can feel quite daunting. Whether you’re preparing for your first big event, or hosting your tenth coffee morning, here are five prompts to get you started…

WHAT? What hobbies and interest do you have? What activity would you find challenging? You can turn any hobby or challenge into a fundraiser, so don’t hold back!

WHO? Use social media to help spread the word about your event. The more people you reach, the better your chances of raising funds and awareness for PSPA

WHERE? Could you hold your event at home?

Do you need to hire a space? Will you join a local or nationally organised event? How far can you travel? These are important things to consider when planning for your event

HOW? How will you collect money at your event? How will you collect sponsorship? Requesting a collection tub or setting up an online fundraising page are easy ways to collect donations and boost your fundraising

WHEN? Having your event at the weekend could maximise attendance and funds raised on the day. Don’t forget to plan for all weathers! If you are undertaking a physical challenge, make sure you have enough time for training!

Scan here to see our fundraising checklist…

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FUNDRAISING YOUR WAY You can be as creative as you like when organising your own event. Our Fundraising Team will help make sure that you have everything you need for your big day!

Here are some ideas to get you thinking...

JUSTGIVING One of the easiest ways to collect donations, raise awareness, and promote your event, is to create an online fundraising page!

HOW WE CAN SUPPORT YOU We are here to support you throughout your fundraising journey.

Once you have decided what you would like to do, let us know, and we can give you the tools to help get you started. Including…

JustGiving pages are easy to set up and personalise. To make fundraising stress-free and enjoyable, all funds raised on your page are sent directly to PSPA!

• A personalised fundraising pack at your request • Sponsorship forms & Gift Aid forms • PSPA Shirts or Running Vests • One to one support from our Fundraising Team – Get in touch, we are happy to help! Email fundraising@pspassociation.org.uk or call 01327 322414

Scan here to set up your own page and start fundraising today!

“The Fundraising Team are brilliant… they are always quick to help, took away any stress, and made me feel truly supported throughout the process” Tomos Northey 6

CHALLENGE YOURSELF Why not organise your own challenge? If you need some ideas, look out for local events like...

Whether you choose to run, trek, cycle or something more extreme, at home or overseas, we have a fundraising event for you!

• Half Marathons

PSPA has limited charity places in popular running events such as London Marathon, Great North Run, and London Landmarks Half Marathon, just to name a few! We can also coordinate places on treks like the Thames Path, the Jurassic Coast, and the Three Peaks. And if you fancy a skydive, we can help you arrange that too!

• Marathons • Popular Treks • Swimming challenges • Cycle challenges • 10km / 5km runs Don’t see anything for you? Check out what events are happening in your area, and enquire at fundraising@pspassociation.org.uk We can help get you set up to fundraise at any event you choose, just let us know what you want to do, and we can send you the right materials!

See more events on our website

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WHY IT MATTERS “After years of frustration, unanswered questions, and worsening symptoms, my wife Linda was finally diagnosed with PSP in April 2021.

Eventually, we found PSPA, and in the summer of 2023, I decided I wanted to give back. I walked 400km in 75 days and raised over £2,000 to help others facing this terrible disease.

I quickly became her full-time carer and saw first-hand the devastating impacts of PSP. As the disease progressed, so did Linda’s symptoms.

Her speech declined, standing and swallowing grew difficult, and vivid hallucinations became more frequent. It was devastating to watch, my partner and best friend of over 21 years, was slipping away.

That October, just weeks after completing the challenge, Linda sadly lost her fight.

Since then, I’ve continued to raise vital funds and awareness in Linda’s memory — to honour her life and to improve the lives of others affected

by PSP & CBD.” David Carter

The emotional and physical exhaustion was overwhelming.

Although the Covid-19 pandemic gave us more time at home together, it felt cruel. Medical appointments were delayed, waiting times increased, and being a full time carer, I couldn’t make the most of that time with her.

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“Carol’s mum, Isobel, was diagnosed with CBD, and my mum, Helen, with PSP. It was incredibly strange given how rare both diseases are.

We both agreed that we felt helpless and decided then that we would try to raise money for PSPA. We’re not daredevils, just two busy mums wanting to try to help, so we decided to do what we love and walk!

During those walks, we talked about everything—our mums’ symptoms, our dads’ experiences as carers. Sometimes we cried, sometimes we just hugged it out on a farm track.

We raised over £2,000 which blew us away!” Natalie Kendall

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“Fundraising for PSPA has made me feel like I’ve truly made a difference.

I was quite nervous, but it’s gone far better than I ever expected. I hope I’ve helped people feel inspired to start their own fundraising.

I’ve really made myself proud.” Erem Demirel

“Mum was diagnosed with PSP in December 2022. A diagnosis helps, at least it helped me, as now I am hugely interested in helping raise awareness of this awful condition that has been stealing my mum over the last few years.” Kirsty Turner 10

STAYING SAFE As with all things, there are rules and regulations to be aware of when fundraising. It is important that you adhere to these guidelines, in order to ensure a safe and legal event.

BANKING YOUR FUNDS One of the best parts of any fundraiser is counting the cash and declaring the grand total. Here’s how you can do it...

Things to consider…

• Data Protection • Relevant Licences • Insurance

• Visit www.pspassociation.org.uk and make a one-off donation, quoting your full name and the nature of your fundraiser

• Risk Assessments • Food Hygiene • Raffle guidelines

• Call 01327 322414 and pay over the phone using a credit or debit card • Post a cheque to our office (addressed to FREEPOST PSPA)

Scan here for more guidance and safety tips:

• Bank transfer - Call 01327 322414 for our bank details • If you have a JustGiving page, you can add the amount raised by making a donation to that page.

REGISTER YOUR EVENT WITH US HERE!

TOMOS NORTHEY, SWANSEA HALF MARATHON 2025

“I’ve now committed to taking part in an event every year so I can continue raising funds and playing my small part in supporting PSPA” Tomos Northey

Get in touch with the team today, simply call 01327 322414 or email fundraising@pspassociation.org.uk

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#TEAMPSPA Fundraising: 01327 322414 fundraising@pspassociation.org.uk Helpline: 0300 0110 122 helpline@pspassociation.org.uk

@teampspa PSPAssociation psp-association

PSPA is a registered charity in England and Wales (1037087) and in Scotland (SC041199)

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