Give PKD the Bump toolkit Your guide to locally supporting PKD

Give PKD the Bump toolkit Your guide to locally supporting PKD

Welcome to the Give PKD the Bump toolkit A healthy kidney is the size of a fist. But for people with PKD their kidneys can swell to four times their healthy size and weigh up to 100 times more. 1-3 That s why we have created the fist bump a fun, easy and memorable way to share your commitment to supporting PKD. 2 1. NHS choices. Autosomal Dominant Polycystic Kidney Disease. Available at: www.nhs.uk/conditions/autosomal-dominant-polycystic-kidney-disease/pages/symptoms.aspx. Accessed July 2016. 2. Molina DK, DiMaio VJ. Am J Forensic Med Pathol 2012; 33(4): 368 372. 3. National Institute of Diabetes and Digestive and Kidney Diseases (NIH). Polycystic Kidney Disease. Available at: www.niddk.nih.gov/health-information/health-topics/kidney-disease/polycystic-kidney-disease-pkd/pages/facts.aspx. Accessed July 2016.

Introduction Introduction Whether you have PKD yourself, someone close to you has it, or you re compelled by the cause and eager to help, this toolkit is for you. The following pages will provide you with a range of useful resources and information to help you when organising and promoting your own activities or events to raise awareness of PKD in your local area. In doing so, you can help people to understand the condition and its impact on the lives of those affected. Ultimately, this guide will help you to raise awareness, drive donations and spread the word, so that together we can Give PKD the Bump. 3

Talking about PKD Talking about PKD is the first step to increasing awareness and building support. However, communicating the condition with others can be challenging because of lack of awareness. If you re planning on organising an activity or event in support of PKD, it is important to communicate the disease in a way that others can relate to. This will ensure that those who participate gain an understanding of PKD, feel inspired to make a difference, engage with the campaign and donate to the cause. 4

Talking about PKD Knowing the facts Communicating key facts about PKD is an important tool in spreading awareness and understanding of the disease. You can use these key facts to help communicate your messages about PKD: PKD causes fluid-filled cysts to develop on the kidneys, which can cause them to swell to up to four times their healthy size and weigh up to 100 times more. 1-5 A healthy kidney is the size of a fist. With PKD it can swell to the size of a rugby ball. PKD affects an estimated 12.5 million people worldwide PKD exists in two forms; Autosomal Dominant Polycystic Kidney Disease (ADPKD) and Autosomal Recessive Polycystic Kidney Disease (ARPKD) 1 PKD can lead to a debilitating life of fatigue, long-term pain and kidney failure 5 1. Eccles MR et al. F1000 Prime Rep 2014; 6: 24. 2. National Institute of Diabetes and Digestive and Kidney Diseases (NIH). Polycystic Kidney Disease. Available at: www.niddk.nih.gov/health-information/health-topics/kidney-disease/polycystic-kidney-disease-pkd/pages/facts.aspx. Accessed June 2016. 3. Molina DK, DiMaio VJ. Am J Forensic Med Pathol 2012; 33(4): 368 372. 4. Patient.co.uk. Polycystic kidney Disease. Available at: patient.info/health/polycystic-kidney-disease. Accessed June 2016. 5. NHS choices. Autosomal Dominant Polycystic Kidney Disease. Available at: www.nhs.uk/conditions/autosomal-dominant-polycystic-kidney-disease/pages/symptoms.aspx. Accessed July 2016. 6. Kidney Health. Available at: www.kidneyhealthcare.com/2009/03/kidney-health.html. Accessed June 2016.

Talking about PKD Autosomal Recessive PKD Autosomal Dominant PKD ARPKD is a rare form of PKD affecting one in 20,000 babies and children 1 It is a genetic condition passed down from parent to child. If one parent has the disease, there is a one in four (25%) chance that they will pass it onto their child 2 ARPKD causes cysts to grow while the baby is still developing in the womb, preventing other organs from forming properly 1 ARPKD can cause severe breathing difficulties and serious internal bleeding 1 One in three babies do not survive past their first few weeks of life with ARPKD 1 ADPKD affects up to one in 1,000 people worldwide 2 It is a genetic condition passed down from parent to child. If one parent has the disease, there is a one in two (50%) chance that they will pass it onto their children 2,3 ADPKD symptoms normally manifest in adulthood and include long-term pain and kidney failure 2 ADPKD is the fourth most common cause of kidney failure worldwide, which requires dialysis and kidney transplant. 4 At the moment there is no known cure for PKD. 5 6 1. NHS choices. Autosomal Recessive Polycystic Kidney Disease. Available at: www.nhs.uk/conditions/autosomal-recessive-polycystic-kidney-disease/ Pages/Introduction.aspx. Accessed July 2016. 2. National Institute of Diabetes and Digestive and Kidney Diseases (NIH). Polycystic Kidney Disease. Available at: www.niddk.nih.gov/health-information/health-topics/kidney-disease/polycystic-kidney-disease-pkd/pages/facts.aspx. Accessed July 2016. 3. Grantham JJ. N Engl J Med 2008; 359: 1477 1485. 4. Spithoven EM et al. Nephrol Dial Transplant 2014; 29: iv15 iv25 5. Sun Y et al. Acta Pharmalogica Sinica 2011; 32: 805 816.

Talking about PKD Despite all of this, PKD remains a largely unknown condition and, as a result, fundraising remains limited. This is where we need your help. 7

Give PKD the Bump: The campaign 8

The campaign What are we striving to achieve? The campaign is working towards three core objectives: In order to achieve these goals, we need your support. Increase awareness of PKD Enable education and understanding of PKD How can you help? In the fight against PKD, every bump helps. All efforts to support the campaign are greatly appreciated, no matter how big or small. Engaging your family, friends and local community with the campaign is a great way to effectively spread the word about PKD. To help you in doing so, we have developed a range of resources which you may find useful. These will help you to raise awareness, both of your own activities and of the cause itself, so that together, we can Give PKD the Bump. Generate donations to fund essential research and patient support 9

The campaign PKD posters To help you to promote your local event or activity, we have created free educational posters for you to download from BumpPKD.com to use at your events. These posters offer information about PKD, providing background and context to further spread awareness of the condition. There will also be additional posters available on the website that you can tailor for your own event by following the simple guidelines provided. 10

The campaign Social media In today s digital age, social media is a great way to share a message quickly to a large audience. It is immediate and far-reaching, and can therefore be an effective method for promoting your local events or activities. Facebook can be especially useful, with existing functions that enable you to arrange events, invite your friends, share information and monitor attendance. Give PKD the Bump will regularly generate content across national Facebook, Instagram, YouTube and Twitter channels, with the conversation tagged with our hashtag, #BumpPKD. If you include this hashtag when posting about your own event, then your local PKD association can see your support, and might even share or retweet your post! What is a Hashtag? # Hashtags are like keywords that can be used to organise posts or tweets. By including your hashtag in a social media post your content will automatically join the conversation surrounding that tag and will appear in the feed along with all other posts containing the same hashtag. Make sure you include #BumpPKD in your posts to have your content featured within our social wall, where all other tagged posts and tweets will be available to view. 11

The campaign Give PKD the Bump pin badge A health kidney is the size of a fist, but with PKD, kidneys can swell to four times their size and weigh up to 100 times heavier than usual. The PKD pin symbolises a healthy kidney whilst simultaneously displaying the Give PKD the Bump icon. For a small donation, each pin is supplied with an educational card offering information on the campaign and the cause, and directing people to the website for more information. When worn, the pin acts not only as a show of support in the fight against PKD, but also as a prompt for conversation. It helps to ignite discussions around the cause, and can help you to spread the word. These pins can be purchased from the BumpPKD.com website as well as through your local PKD association. By selling them at your event they can be an effective way of raising money for PKD and providing further information for everyone who attends. 12

Showing your support 13

Showing your support Connecting campaign and community When organising your local PKD event the possibilities are endless. To help you capture the hearts and minds of your local community, and engage them with the cause, we have gathered together some useful ideas. Remember, all efforts are greatly appreciated, and even the smallest contribution can help. 14

Talking about PKD Here are some of our ideas to engage your local community with the cause, and encourage donations and support for the campaign. Pin badge donations Encourage your friends and family to buy the PKD pin badges Have some kidney themed fun Curate some kidney bean recipes, tell kidney themed jokes or create a song parody. Share your creations with #BumpPKD Set people a challenge Who can do the most extreme #BumpPKD video? The most amount of bumps in a single location? The most daring bump? Celebrate the annual PKD awareness days Wear casual clothes to work for a small donation Sponsored events Take part in a sponsored run, walk or climb, and encourage friends and family to support you and donate, or get involved themselves Arrange a bigger bake sale or competition within your community, with participants encouraged to make cakes four times bigger than normal 15

Talking about PKD Sponsored office boxing match using inflatable gloves that are four times larger than usual Wear clothes four times bigger than normal Organise a non-uniform day within your workplace and/or local schools where those who take part are encouraged to wear clothes that are four times larger than usual Start a competition on social media Post a PKD related image to social media, and encourage followers to post caption suggestions using #BumpPKD. Perhaps even offer a prize for the best caption Paper, scissors, fist bump Arrange a paper, scissors, fist bump league where participants are encouraged to donate to take part, and the winner receives half the money raised Organ donation Consider using your workplace channels to generate discussion and promote organ and tissue donation. You can place posters on notice boards, in staff rooms, staff changing rooms, restrooms and kitchens. Worlds largest fist bump Gather your community together and attempt a world record for the largest collective fist bump. Post on social media using the hashtag #BumpPKD 16

Advertising your activities 17

Advertising your activities Advertising your activities Some good places to exhibit your posters include: Once you ve decided how to support the campaign, you ll need to make sure everybody knows about what you re doing. Use our posters and initiate social media conversations to make sure your activities spread far and wide. Promote with posters Creating your own personalised posters is a great way to spread the word about your activity. Their visually engaging design will capture public attention, so that the content you include can quickly and effectively communicate the details of your event. Supermarkets and newsagents Communal work areas Restaurants and pubs To make sure posters are as impactful as possible, make every word count, and keep what you say short and simple. For local events, posters are best displayed in busy, indoor areas. However, please make sure you gain permission from someone with appropriate authority before setting up your posters. Shopping centres Healthcare centres e.g. GP surgeries and nephrology clinics Village and town halls 18

Advertising your activities Support with social media Whilst posters establish an impactful and eye-catching physical presence, social media should also be used to support and extend the reach to different audiences. Channels such as Facebook, Twitter, Instagram and YouTube enable you to share a message, very quickly, to your entire local community and far beyond. Not only can you use social media channels to promote your event, but you can also use them to inform and update your followers about how it s all going in real time. Even once you ve finished, you can continue to post images and videos of your activity, to create interest in both the cause and in any future events you may wish to arrange. The campaign is already hosting conversation with a growing PKD community, using the hashtag #BumpPKD. Make sure your own posts also use this hashtag, so that everyone can see your support. Your post might even be shared or retweeted from your national PKD organisation! #BumpPKD videos Personal stories Sharing experiences Inspirational quotes BumpPKD images Event updates Fundraising activities 19

Advertising your activities Generate publicity Social media is not the only method of communication that is available to you. You could reach out to other resources, such as local newspapers and radio stations, to generate publicity and raise awareness, allowing you to reach a wider audience. Here are a few ideas on how you could do this: Contact your local newspaper. Organise a photo opportunity to help raise awareness or promote your local event. Ring your local radio station. Opportunity to share your PKD story. As well as talking about the condition also encourage others to get involved. Write a letter to the editor of your local paper. Encourage them to start talking about PKD. You could even write an opinion piece which they could publish. Post a blog about PKD. Write about your own experiences with PKD or people you may know who are living with the disease. Use the blog to spread awareness and start discussions around PKD. Let local media contacts know about PKD. Use this opportunity to promote your event through a press release and let them know about any other events taking place in your community. 20

Advertising your activities The power of a true story Whatever you do, make sure you tell a compelling story. You can help those attending your event understand PKD, and its impact on the lives of those living with the condition. By increasing understanding within your community, you can help raise awareness of PKD by providing these individuals with an insight into why their support is so valuable. One of the best ways to do this is to tell a personal story of someone living with PKD. This allows people to relate to someone with PKD and understand what they go through every day. If you have PKD yourself or know somebody else who has it, consider involving them in your event. Ask if they would be comfortable sharing their story, and being an ambassador in the fight against PKD. Even if you don t know anyone with the condition, you can still tell a story. Our website, BumpPKD.com, contains a number of real-life patient accounts of living with PKD. Use these to tell their stories at your events and share their stories on social media. Ultimately, they are real stories of a real disease creating very real challenges for families affected. That is why any support you can offer could make a very real difference. 21

Donations 22

Advertising your activities Donations Donations towards research into PKD will be collected online, via BumpPKD.com. The campaign elements will drive the public to the campaign website to donate, where they will then be redirected to their national organisation web-page to make a donation. As such, BumpPKD.com will not receive or take any donations directly, but will lead the public to their national organisations who will be responsible for collecting donations at a national level. PKD Charity (UK) Tess Harris www.pkdcharity.org.uk tess.harris@pkdcharity.org.uk ALCER (Spain) Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Riñón www.alcer.org informacion@alcer.org AIRP Associazione Italiana Rene Policistico (Italy) www.renepolicistico.it airponlus@bumppkd.it Association Polykystose France (A.P.K.F.) www.polykystose.org apkf@polykystose.org PKD Familiäre Zystennieren e.v. PKD Familiäre Zystennieren e.v. (Germany) www.pkdcure.de gs@pkdcure.de korst@pkdcure.de PKD Switzerland www.swisspkd.ch/de/home info@swisspkd.ch PKD International PKD International www.pkdinternational.org info@pkdinternational.org tess.harris@pkdinternational.org 23

We hugely value your support; each and every local event helps our community and our momentum to grow. Together, we can Give PKD the Bump. PKD International