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Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience.​ Join us in our mission to fund vital research and raise awareness about BPAN. Your Business Partner with us to become a corporate champion for Action for BPAN. Your collaboration can significantly enhance the lives of individuals affected by BPAN, contributing to a brighter future for children impacted by this rare neurodegenerative disorder. Take Some Inspiration! How your business can hep Corporate Support for Action for BPAN At Action for BPAN, we believe that collaboration with businesses is key to driving lasting change in the fight against BPAN. By partnering with us, your business can make a profound impact on the lives of children and families affected by this rare and devastating neurodegenerative condition. There are many ways your company can get involved, and every partnership helps us to fund vital research for a cure or treatment , raise awareness, and provide hope for those impacted by BPAN. Here are a few ways businesses can join us in this important mission: Payroll Giving One of the easiest ways your employees can support Action for BPAN is through payroll giving. This system allows employees to donate a set amount directly from their salary each pay period. Payroll giving is simple to set up and can be done in a way that is both convenient and tax-efficient for both the company and employees. By offering this option, your company can help create a consistent stream of support for BPAN research while empowering your employees to make a difference. Corporate Donations Your business can make a direct impact by contributing corporate donations to Action for BPAN. Whether a one-time gift or a regular contribution, these donations help fund cutting-edge research, provide resources for families affected by BPAN, and raise awareness of this rare condition. Every donation, regardless of size, helps us move closer to finding a cure for BPAN. Businesses can also make their donations more impactful by setting up matching schemes or encouraging employee fundraising, amplifying the difference made. Corporate Partnerships A partnership with Action for BPAN allows your company to play a vital role in supporting both our mission and the families affected by BPAN. Through a long-term partnership, your business can help fund research grants, provide resources, and ensure that those living with BPAN have the support they need. Benefits of partnering with Action for BPAN include: Enhanced Corporate Social Responsibility (CSR): Align your brand with a cause that truly makes a difference. Employee Engagement: Give your employees the opportunity to get involved in meaningful work, fostering a sense of pride and purpose. Sponsor Our Events Your company can help sponsor our fundraising events, from charity galas to sponsored challenges, by offering financial support or in-kind contributions. Event sponsorship provides high visibility for your business while making a direct contribution to the success of our efforts to raise vital funds for BPAN research. As a sponsor, your business will be featured prominently in event materials, online promotions, and at the event itself, allowing you to showcase your commitment to supporting groundbreaking medical research and the BPAN community. Round-Up Donations Let customers round up their purchases, donating the difference to Action for BPAN. Employee Fundraising and Volunteering Encourage your employees to get involved by hosting fundraising events or volunteer days to support Action for BPAN. Whether it’s a company-wide walk, bake sale, or online fundraising campaign, these activities help bring your team together and make a tangible difference in the lives of those affected by BPAN. You can also offer employees paid time off to volunteer with the charity, strengthening your company’s commitment to giving back to the community. Matching Gifts If your company offers a matching gifts program, your employees’ contributions to Action for BPAN can be doubled. This is a great way for businesses to maximize the impact of their employees' donations and demonstrate their support for the cause. Matching gifts can be a powerful motivator for employees to give, knowing that their contributions will go even further. Cause-Related Marketing Your business can also support Action for BPAN through cause-related marketing campaigns. This involves a portion of your sales being donated to the charity, which could be for a set period, on specific products, or as part of a larger awareness campaign. This type of partnership can benefit both the charity and your business, as it helps raise funds for important research while also boosting your brand’s visibility in a positive, socially responsible way. Why Partner with Action for BPAN? By partnering with Action for BPAN, your business will: Make a direct impact: Your support will help fund life-changing research for a cure or treatment and provide much-needed hope for families living with BPAN. Boost your brand reputation: Align your company with a cause that has a real, measurable impact on the lives of those who need it most. Positive Brand Visibility: Your business will be recognized for its support of an important cause, helping to build a reputation for being a socially responsible organization. Engage employees: Corporate partnerships allow your employees to participate in charitable giving, whether through donations, fundraising, or volunteering, fostering a positive work culture. Be part of a movement: Help us bring awareness to BPAN and work towards finding a cure for this rare and devastating condition. Customizable Partnership Options: Whether through fundraising events, co-branded campaigns, or specific research initiatives, we can tailor a partnership that fits your company’s goals and values. Get Involved Today We’d love to discuss how your business can partner with Action for BPAN and make a real difference in the lives of those affected by BPAN. Contact us today to explore partnership opportunities and learn more about the various ways your business can support our mission. How Your Efforts Can Help Your donations and partnership will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. By choosing Action for BPAN, you and employees can come together to raise awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help you on your fundraising journey! Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising idea a reality! Select the option 'Partnership' to talk to us about your idea or query! First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Sponsored Challenge Looking for a fun way to support Action for BPAN? Take on a sponsored challenge to help raise funds for our cause! Whether you're into fitness, food, or adventure, find inspiration or create your own challenge. You'll have a blast while making a real difference for those affected by BPAN. Ways You Can Help Setup a Page! Face your Fear Host an Event Shave or Grow Something! Get Active! Overcome a Personal Challenge Previous Sponsored Challenges See below some of the amazing work that has already been done to fundraise for the research and treatment of BPAN! Slide Title This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content.

Get involved with Action for BPAN and make a difference! Explore various fundraising options For fundraising at school to help support research and give hope to families affected by BPAN. Fundraising at School Fundraising for Action for BPAN at school is rewarding for students and staff alike. Not only does it support a worthy cause, it teaches kids the joy of helping others while having fun. Share ideas with your school or after school clubs and make a positive impact together! Take Some Inspiration! Set Up Your Fundraising Page Be sure to register your fundraising with us at the bottom of this page and share your story across social media along with plenty of photos to make your page truly stand out! To make organising your sponsorship simple and effective, we recommend using an online fundraising platform like JustGiving . Not only does it streamline the donation process, but it also allows us to claim Gift Aid - an additional 25% on eligible donations from UK taxpayers. This means that a £10 donation could be worth £12.50 at no extra cost to the donor! You can easily share your fundraising page with a JustGiving link or QR code to encourage even more people to support your efforts. If you need any support with any of this please just ask us, we are here to help. Guess how many.. Challenge pupils to guess how many items are in a jar for a small donation and prize! Own Clothes or Theme Day Get the whole school involved and ask for an own clothes day for Action for BPAN - Perhaps this would be good to do for rare disease day on the 28th of February Swimathon Get the PE department or after school swim club involved and ask to do a swimathon for Action for BPAN, ask students to take sponsorship forms home for family and friends to donate £1 per meter swam or donate a certain amount if they swim for a pre-determined amount of time! Get the teachers in the water for added fun! Car Wash A simple and profitable event that can be held outdoors with the help of volunteers and staff Bake Sale A delicious way to raise money, and you could even add a contest to motivate your bakers? Art Fair Challenge pupils to show off their drawing skills and enter your Action For BPAN competition for a small fee. Talent Show Show off your amazing talents that are sure to bring in a crowd while charging a ticket fee for action for BPAN Raffle Why not hold a raffle? You can ask for donations from local people and businesses as prizes, and sell raffle tickets for a small amount. Please make sure you check the rules for holding a raffle, we’re here to help if needed. Please see Gov guidance here Turn £5 into.. Give groups of students £5 to try and turn into more. They could bake or make crafts to sell Sponsored events Encourage students to practice skills they've learned in class while raising money. For example, host a read-a-thon or spell-a-thon where students receive pledges from friends, family, or peers. You can collect pledges in cash with our sponsorship form or online. Wacky Hair Day Try out the wackiest hairstyle you can think of for a donation Coffee Morning for Parents Love a good natter over a coffee and a slice of cake? Coffee mornings are a lovely way to raise money that doesn't require much organisation and it's an excellent excuse for a good catch-up! How Your Efforts Can Help Your fundraising will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. By organising events in your with your child's school, friends can come together to raise awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help you on your fundraising journey! Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising dream a reality! Select the option 'Fundraising' to talk to us about your idea or query! First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Discover who we are at Action for BPAN, our mission to fund the vital research, support affected families , and raise awareness for a brighter future. Action for BPAN Action for BPAN is a charity founded by two dedicated mothers, Nicole Harper and Kelly Sayers, whose lives were forever changed when their daughters were diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration). Despite the rare and devastating nature of the condition, Nicole and Kelly found each other through a worldwide Facebook group for BPAN families, where they connected over their shared journey and the urgent need for a cure . Motivated by their love for their daughters and the lack of available treatments, they co-founded Action for BPAN with a mission to raise critical funds for research, support families affected by BPAN, and advocate for better awareness and care. Kelly's incredible fundraising efforts had already raised over £100,000, which helped kick-start the first stages of gene therapy research at Great Ormond Street Hospital in 2024. This ground-breaking work is paving the way for potential treatments that could change the lives of BPAN children worldwide. With an unwavering commitment , both mothers have dedicated their time and energy to this cause, not just for their daughters, but for every child affected by BPAN. They believe that together, with the support of the community, we can create a cure and give every child a brighter future. OUR VALUES Commitment , Transparency , Innovation , and Integrity . These core values have been at the heart of the Action for BPAN mission since our founding. We wholeheartedly commit to our work with passion and dedication, striving to make a meaningful impact in the lives of those affected by BPAN. We operate with transparency , openly sharing our efforts with the community and inviting others to join us in our mission. We also challenge ourselves to think creatively, applying an innovative approach to tackle challenges and drive meaningful progress. Most importantly, we operate with integrity and respect , ensuring that every action we take reflects our unwavering commitment to those we serve. We aim to bring simplicity to a complex disorder, empowering people with the knowledge that there is always something positive that can be done. This mission continues to guide the success and purpose of Action for BPAN, inspiring hope and progress every step of the way. ACTION FOR BPAN TEAM This is our amazing team! Our trustees and medical advisers come from diverse backgrounds, including healthcare, law, business, fundraising, and of course, our personal connections to loved ones with BPAN, together we work to ensure the success of the charity. We are united by a shared goal - to advance research, raise awareness, and ultimately achieve a cure and viable treatments for BPAN. Kelly Sayers Co-Founder & President After Emily’s diagnosis in 2020, I made the life-changing decision to leave my 20-year career in IT software sales to dedicate myself fully to our family. Alongside being Emily's full-time carer and advocate, I am also a proud parent to her older brother Maxi, whose needs and wellbeing remain central to our lives. Supporting both of my children required constant learning, research and unwavering commitment - a responsibility I embrace wholeheartedly. My curiosity about people and what drives them shapes my approach to challenges. I strive to give my best in all I do, guided by integrity. Stepping outside my comfort zone is a personal mission, and I enjoy building connections, fostering collaboration, and creating win-win solutions. Words cannot capture my passion and determination to find a cure for BPAN and support the incredible community on this journey. This mission is my purpose. Schalk Visser Treasurer Schalk Visser is a finance and capital markets executive with over 25 years of experience in investment management, investor relations, and capital raising across global markets. Currently the Managing Director of Selinus Partners Ltd. Schalk has held senior leadership roles at major firms including Mitsubishi Estates, AEW Europe, and CBRE Investors. His expertise spans capital raising, fund structuring, compliance, and global team leadership. Schalk holds a B.Com in Finance and Economics, a B.Com Hons. in Investment Management, and is a CFA charterholder. DR. Apostolos Papandreou Medical and Reaserch Advisor Apostolos studied medicine in Greece, before moving to the UK in 2007 for postgraduate training in paediatrics and, subsequently, in paediatric neurology (GOSH, 2013-2021). He clinically specialises in paediatric-onset movement disorders. His PhD (2015-2019) and post-doctoral (2021-2022) studies focused on BPAN, understanding its pathophysiology and developing novel, disease-specific therapeutics for affected young people. After finishing training in 2021, he worked as a consultant at the Evelina Children's Hospital in London (2021-2024) and now works at Cambridge University Hospitals (2024-onwards). Nicole Harper Co-Founder & Secretary Mother of Isabella, who was diagnosed with BPAN in 2021. When we received Isabella’s diagnosis, we were faced with the harsh reality that there was no UK charity dedicated to BPAN. This drove me to connect with other families in the UK and beyond, seeking support and understanding of what was happening to our little girl. I am a determined and focused person who has always been a problem solver. I cannot accept Isabella’s current future, and this mindset fuels my commitment to change the course of her life. Through this journey, I’ve learned that research into BPAN is advancing rapidly, and I am driven by the progress being made toward a cure and effective treatments. Motivated by that progress and my love for Isabella, I’ve dedicated myself to Action for BPAN—using my skills and passion to support research, advocate for families, and make a meaningful difference in the lives of those affected by this rare condition. Susannah Kemmis Legal Trustee Susannah is a qualified solicitor with over 25 years of experience in the Investment Banking & Finance and Commercial Property legal sectors. She is the owner & director of a corporate commercial legal practice and has spent many years sitting on the board of an Educational Trust. Susannah, her husband, and two children are keen fundraisers. They've undertaken many challenges, including recently climbing Mt. Kilimanjaro and diving with sharks, for causes close to their hearts, and they are fully committed to doing everything possible to raise awareness and funds to support Action for BPAN.

Explore the Action for BPAN gallery to see the inspiring photos of families, fundraisers, and moments that bring families and community together in the fight against BPAN. Gallery Action for BPAN would be thrilled to showcase your incredible fundraising efforts in our gallery! We would love to highlight the impact you're making, so please send us your photos and videos to be featured. Your contributions help raise awareness and support for BPAN, and we can't wait to share your inspiring work with our community! Event Galleries AFB Golf Day 2025 VEIW GALLARY Wellness Day 2025 VEIW GALLARY The Marvellous Festival 2025 VEIW GALLARY Step Up For BPAN Snowdon 2025 VEIW GALLARY This is an example of a fundraising video created for social media from when the awesome Kemmis family climbed mount Kilimanjero for Emily.

Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience.​ Join us in our mission to fund vital research and raise awareness about BPAN. 1/4 Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience. Join us in our mission to fund vital research and raise awareness about BPAN. Support Our Cause About Us Action for BPAN was founded in 2024 by two mothers, Kelly Sayers and Nicole Harper, whose daughters have both been diagnosed with BPAN. Our mission is to bring hope to families by supporting them, raising awareness and generating funds for BPAN research. Thanks to the support of our growing community and volunteers, the UK is joining the global effort to find a treatment or cure. Driven by our love and dedication to our incredible daughters, and with your support, we can make a meaningful difference in the lives of those affected by BPAN. Meet The Team Meet Isabella Isabella is our joyful, vibrant 6-year-old daughter, who was diagnosed with BPAN at the age of 3. Her future is uncertain - she may become part of a wonderful story where research leads to a cure or treatment in time, or a heart breaking story of a little girl that has to suffer BPAN's degenerative symptoms—like Alzheimer's, Parkinson's, and ultimately, the loss of her movement and communication skills. Our mission is to ensure that Isabella and others like her can live a happy, healthy life, and to prevent future generations from having to endure a life with BPAN. Read Isabella's Story Meet Emily Emily is the youngest of our two incredible children, born on 4th April 2016, she was just 4 years old when we received her BPAN diagnosis. Emily is a very special little girl who leaves a lasting impression on everyone she meets, she is full of love, laughter and happiness. Emily gives the best hugs and has a way, even with her limited communication, of charming you into getting exactly what she wants! Whether that's another play fight with her Daddy or a 3rd and 4th story out of Mummy at bedtime! Read Emily's Story What is BPAN Beta-propeller protein-associated neurodegeneration (BPAN ) is a rare and devastating genetic disorder caused by mutations in the WDR45 gene. This condition leads to the accumulation of iron in the brain , resulting in progressive neurodegeneration . The symptoms experienced by affected children resemble those of Alzheimer's disease , Parkinson's disease , Seizures and dystonia , ultimately leading to a loss of motor and communication function's . Time of degeneration varies but typically begins during adolescence, a time when most children are moving forward into the world. Unfortunately, for children with BPAN, this is when they begin to lose the skills they have worked so hard to develop. Learn More BPAN IN NUMBERS 500 The estimated number of cases worldwide known to have been diagnosed with BPAN, most are females. Although the actual prevalence could be higher due to underdiagnosis or misdiagnosis. 5-10% Of the 500 cases worldwide is the estimated percentage of boys diagnosed with BPAN. 10-19 The typical age range of degeneration although there are many known cases earlier and later. 2012 The WDR45 gene was discovered in 2012 by Dr. Tobias Haack. Haack's Discovery was the result of a collaborative study with Dr Susan Hayflick's Lab at Oregon Health and Science University. *Disclaimer. The statistics above are based solely on currently available data and may not represent comprehensive or future information. WHAT WE DO Our Impact We understand the immense challenges faced by families affected by BPAN, and at Action for BPAN, we are dedicated to creating a meaningful impact. Through the funds we raise, we support vital BPAN research, drive awareness initiatives, and organize diverse fundraising efforts, including community events, sponsored challenges, corporate partnerships, and online campaigns. Beyond funding research, we are deeply committed to being there for affected families, offering support, understanding, and guidance through our own lived experiences. Our ultimate goal is to accelerate the development of effective treatments or a cure while providing hope and a strong sense of community for those navigating this journey. Research At Action for BPAN, we are committed to ensuring our community is kept informed about the progress of BPAN research as much as possible. We understand how isolating and frustrating it can be to feel uninformed, especially when the stakes are so high for families affected by this devastating condition. That’s why transparency and communication are at the heart of what we do. We will share regular updates through our website and social media channels, providing the latest news on research breakthroughs and milestones achieved. Whenever possible, we’ll collaborate directly with researchers to relay accurate and accessible information. Our goal is to ensure that no family feels uninformed or unsupported in this journey. Research Updates Fundraising Looking to make a difference? Amazing! Join our fundraising efforts and help us come up with new and creative ideas to support Action for BPAN. Your involvement can have a profound impact on the lives of those affected by this devastating condition. Together, we can accelerate the pace of research and bring hope to families who need it most. Fundraising is not only crucial but also an incredibly rewarding and positive experience. If you’re unsure where to start, we’re here to guide and coach you every step of the way, helping you turn your passion into action. Whether it’s organizing a community event, taking on a personal challenge, or finding new ways to raise awareness, you’ll be part of a movement that truly makes a difference. Join us and see how empowering it can be to help change lives while building connections and spreading hope. Help us Fundraise Volunteering Are you passionate about making a difference? Join us as a volunteer and use your unique skills and experience to support our mission. We welcome individuals who share our dedication to creating meaningful change in the BPAN community and are committed to making a positive impact. Whether you can offer your time, expertise, or creative ideas, your contribution will play a vital role in driving our work forward. Become a part of something truly special and help us bring hope to families affected by BPAN. Together, we can make a lasting difference. Apply to Volunteer LATEST POSTS

Take on a sponsored challenge to raise funds for Action for BPAN! Explore a variety of exciting challenges you can participate in to support BPAN research and help give families affected by the condition hope. Sponsored Challenge Looking for a fun way to support Action for BPAN? Take on a sponsored challenge to help raise funds for our cause! Whether you're into fitness, food, or adventure, find inspiration or create your own challenge. You'll have a blast while making a real difference for those affected by BPAN. Get inspired! Set Up Your Fundraising Page Be sure to register your fundraising with us at the bottom of this page and share your story across social media along with plenty of photos to make your page truly stand out! To make organising your sponsorship simple and effective, we recommend using an online fundraising platform like JustGiving . Not only does it streamline the donation process, but it also allows us to claim Gift Aid - an additional 25% on eligible donations from UK taxpayers. This means that a £10 donation could be worth £12.50 at no extra cost to the donor! You can easily share your fundraising page with a JustGiving link or QR code to encourage even more people to support your efforts. If you need any support with any of this please just ask us, we are here to help. Get Active! Whether you opt for a 5k or an ultra marathon, running events are a great opportunity to ask for sponsorship, whatever your level of fitness. There are lots of companies and event organisers hosting races throughout the year. Entry fees vary but many do not cost a huge amount and sponsored participation is a great way to raise money for your favourite cause or charity. Sponsored walk If you don’t want to run, opt for a sponsored walk instead. Walking events are becoming more and more popular. Walking is also great for fundraising without taking part in an organised event. You can set the route yourself and record it using one of the many apps available for your phone. Just look to Major Tom for inspiration! Cycle races There are cycle races taking place nationwide all year round, catering to all entry levels, from novice to seasoned cyclists. You don’t have to have fancy equipment to enjoy the views whilst raising money. Swimming Whether it’s outdoor wild swimming or your local pool, swimming is a great way of raising money for charity. You can organise your own attempt or join a pre-existing event in your local area or further afield. Santa run 'Tis the Season! Get up on Boxing Day for a Santa run and join thousands of people dressed as Santa running off their festive excesses. Kickstart your New Year health regime and raise much-needed charitable funds at the same time! Get your family involved and create a fundraising page to maximize the donations you can achieve. Boxing Day swim If you’re feeling very brave, then why not take the plunge and take part in a Boxing Day swim? Lots of people wouldn’t dare, so it’s a good opportunity to raise sponsorship money for your favourite cause or charity. Become a Host! A classic for fundraisers - host a Charity Dinner where you can charge an entrance fee and even auction off some items! Or host your own Come Dine with Me event, charging your guests to taste your culinary delights. You could even inject a little competition and get friends and family to host their own as well, so you can score the evening and the cooking. Shave or Grow - your choice! If you’re brave enough, why not shave your head for charity? Make sure you get someone to film it and share the footage on social media along with the link to your fundraising page. Using social media to ask for sponsorship helps to spread the word even further. Whether your beard is a recent addition or you’ve been sporting one for years, people will pay good money to see it come off! Turn the ceremonial shaving of the beard into an event, so you can collect more donations on the day. Alternatively, growing a moustache for charity can be a great team activity. Make sure you give plenty of notice so that those who want to be involved have plenty of time to start growing and grooming a fine moustache! Face Your Phobia Conquer your fear for Action For BPAN! Spiders, Birds whatever makes you squirm! Ask friends and family to sponsor you while you overcome your phobia. Adrenaline junkie Or even if you are simply an adrenaline junkie, you can still tackle something scary! There are lots of skydives to choose from around the country. Make sure you ask as many people as possible to sponsor you before you take the leap! Or a bungee jump can be an exhilarating way to raise money and showcase your daredevil nature. Or if you have ambitions to abseil down a building, landmark or rock face, there are plenty of resources online to help in your quest to abseil for charity. Become your better self! You can finally kick that bad habit you've been wanting to kick! Whether its one of the big habits such as drinking or smoking, to something small that your friends or family would be happy to see the back of! Kill two birds with one stone by becoming a better self and helping out a charity at the same time. Quitting smoking for example - even non-smokers are aware of how challenging it can be to kick a smoking habit, so this challenge will often inspire generous donations. Ask your friends and family to sponsor you in order to motivate you to quit for a month (it doesn’t have to be Stoptober!). You’ll find that it’s hard to cheat when people start giving you money to stop, and you could even donate the money you don’t spend on cigarettes. By kicking the habit for a month, you may even find it easier to stop for good. Dry January (or any month you choose!) is the perfect way to get healthy for a good cause. As well as getting sponsorship for going dry, you can save up the money you would have spent down the pub and donate this at the end of the month too. (Top Tip - Get your friends and family involved in the challenge. This will help to raise even more money and reduce the likelihood of you cheating!) Get creative Or do something that will test the limits of your inner strength ! Tackle the elements with an ice bath or cold water challenge, create your bush tucker trial or overcome something mucky like a Baked Bean Bath! You may need to go to local wholesaler to get enough beans to fill a bath, but this old school fundraising idea is bound to get the interest of your friends and family. How Your Efforts Can Help Your fundraising will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. By Taking part in a sponsored event you can raise awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help your fundraising journey and can provide fundraising materials such us sponsorship forms and decorations like Action for BPAN bunting. Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising idea a reality! Select the option 'Fundraising' to talk to us about your idea or submit a query. First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Get inspired with ideas and tips for fundraising in your community to support Action for BPAN’s mission to fund research and bring hope to families affected by BPAN. Fundraise in Your Community Fundraising for Action for BPAN unites your community while supporting a worthy cause. It is a great opportunity to bring people together and create unforgettable memories. Whether hosting an event or a small gathering, rally your friends, family, and neighbours to make a difference together! Take Some Inspiration! Set Up Your Fundraising Page Be sure to register your fundraising with us at the bottom of this page and share your story across social media along with plenty of photos to make your page truly stand out! To make organising your sponsorship simple and effective, we recommend using an online fundraising platform like JustGiving . Not only does it streamline the donation process, but it also allows us to claim Gift Aid - an additional 25% on eligible donations from UK taxpayers. This means that a £10 donation could be worth £12.50 at no extra cost to the donor! You can easily share your fundraising page with a JustGiving link or QR code to encourage even more people to support your efforts. If you need any support with any of this please just ask us, we are here to help. Local Events in your area We have the Superhero Tri which is a unique and inclusive triathlon event held annually at Dorney Lake, Windsor, there are many other events run by a vast array of organisers that you can join and fundraise for Action for BPAN. See fundraiser regulator guidance here . Picnic or BBQ Host a picnic or BBQ fundraiser to support charity! Bring your community together for delicious food, fun activities, and a great cause. Enjoy the day while making a meaningful impact! Car Wash A simple and profitable event that can be held outdoors with the help of volunteers and staff Bake Sale A delicious way to raise money, and you could even add a competitive element to motivate your bakers? Raffle Why not hold a raffle in your town or village? You can ask for donations from local people and businesses as prizes, sell raffle tickets for a small amount. Please make sure you check the rules of holding a raffle, we’re here to help if needed. See gov guidance you will need to follow here . Sports Tournaments Football, Golf, Show Jumping! Whatever your sport, organise a tournament in the name of Action for BPAN. You could even ask local shops or businesses to donate prizes and charge an entry fee to competitors. If you need a hand just let us know we're happy to help! Trivia Night Bring the community together at a local bar or restaurant for a fun night of TRIVIA!! Bingo Always a fun game that's great for getting people of all ages together for a good time! see the guidance you will need to follow here. Coffee Morning Love a good natter over a coffee and slice of cake? Coffee mornings are a lovely way to raise money that doesn't require much organisation and it's an excellent excuse for a good catch up! Seasonal Fundraising Do you love the holidays Halloween, Christmas, Easter? you could transform your home into an extravagant display for your community to marvel at while raising funds for Action For BPAN! Please let us know so we can send you a donation QR link to display for your donations. Fundraising in Celebration Whether you’re celebrating a wedding, civil partnership, anniversary, birthday, retirement or another special occasion, you can support Action for BPAN by asking friends and family for charity donations in lieu of gifts. How Your Efforts Can Help Your fundraising will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. By organising events in your community, friends and family can come together to raise awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help you on your fundraising journey! Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising idea a reality! Select the option 'Fundraising' to talk to us about your idea or query! First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Thank you for considering a donation to Action for BPAN. Whether you donate one-off or monthly, your support will help us fund the vital research into BPAN and helps provide hope to families affected by the condition. Every contribution brings us closer to a brighter future. DONATE We would be honoured if you could join us in our mission to raise money for a cure or treatment for BPAN. Every contribution, no matter how big or small, when combined will make a significant difference to research progress. We are grateful for your support and appreciate your willingness to help us make a positive impact for everyone living with BPAN. If you would like to support Action for BPAN by making a monthly or one off donation please use the purple JustGiving in button below. Action for BPAN uses JustGiving as they are a trusted provider with the lowest fees that enables us to maximise your donation. Other ways you can donate: There are a few ways in which we can receive your donation, all of which helps us enormously in our goal to fund research and treatment for BPAN. If you have raised money through your incredible fundraising efforts please let us know when you are paying you're fundraising in so we can send you confirmation. Engage@actionforbpan.co.uk One-off Payment Use the button above to make a one-off payment in support of BPAN. You can choose a preselected amount or enter your own amount to donate. Please leave a personalised message too! Monthly Direct Debit Select the 'Monthly' option in the button above to set up a recurring monthly payment. You can choose the amount and opt in or out with JustGiving whenever you want. Bank Transfer You can use the following details to pay your donation directly to us: Name: Action for BPAN Account Number: 67384552 Sort Code: 08-92-99 IBAN: GB11CPBK08929967384552 BIC: CPBKGB22 Pay by Cheque If you would like to send a donation via post please send it to us at: Action for BPAN Westfield Lodge Old Mill Lane Bray, Maidenhead SL6 2BG United Kingdom Leave a Gift in your Will Leave a legacy of hope by including Action for BPAN in your will. Please follow this link to find out how you can do this.

Discover how you can support Action for BPAN by using your skills or services to help fundraise. Learn how your unique talents can make a difference in the fight against BPAN. Skills or Services Use your skills or services to fundraise for charity! Offer lessons, workshops, or creative services in exchange for donations. It’s a meaningful way to share your talents, interests, side hustles, etc. and make a positive impact in doing so. Take Some Inspiration! Set up a Fundraising Page There are lots of ways to seek sponsorship for challenges large and small. Whether you choose to travel miles for your challenge or you pick an event that is run locally, you can ask friends, family, and work colleagues to support you with a donation. Don't forget to register your fundraising at the bottom of this page, and make sure to add your story and lots of pictures to make it extra special! We recommend using an online fundraising platform such as Just Giving to make organising your sponsorship super easy! We can also collect Gift Aid which is an additional 25% so this means that if your donor is a UK taxpayer a £10 donation would actually be worth £12.50! Use Your Skills or Services to Fundraise for Charity Looking for a creative way to give back to a cause that matters to you? Why not use your unique talents, hobbies, or professional skills to raise funds for Action for BPAN? By offering lessons, workshops, or creative services in exchange for donations, you can make a significant difference in the fight against BPAN, all while doing something you love. It's a powerful and meaningful way to combine your passion with philanthropy. Whether you're an artist, teacher, coach, or entrepreneur, there are countless ways to use your skills to raise money for BPAN research and support families affected by this devastating condition. Here are just a few ideas to inspire you: Offer Workshops or Classes Share your expertise by hosting a workshop or class in areas like painting, cooking, photography, fitness, or dance. Set up a "pay-what-you-can" or suggested donation system where participants contribute to Action for BPAN. Use online platforms to host virtual workshops, allowing supporters from all over the world to participate. Host Creative Events If you're a musician, consider hosting a concert, open mic night, or live stream performance in exchange for donations. Writers or poets could offer a special reading or create personalized poems for donations. Craft enthusiasts can offer handmade goods or set up a craft-making session with all proceeds going toward BPAN research. Personalized Services for Donations Offer personalized services like photography, event planning, web design, or graphic design in exchange for donations to Action for BPAN. Offer a service, such as dog walking, babysitting, or tutoring, with the proceeds going to the charity. If you have a particular talent—like makeup artistry, styling, or gardening—use it to host a session or experience for others, where the fee goes toward raising funds. Host a Virtual Challenge or Event Whether it's a fitness challenge, a virtual race, or a creative competition, encourage people to donate to participate. Examples include a "sponsored run," "dance-a-thon," or a 30-day art challenge—where participants commit to doing an activity or task each day in exchange for raising funds. Leverage Your Business or Side Hustle If you have a small business or side hustle, consider donating a percentage of your sales or profits to Action for BPAN. Restaurants, cafes, and other service-based businesses can host special fundraising days where a portion of the revenue supports BPAN research. Organize Online Auctions Use your creative talents or connections to curate an online auction with donated items, services, or experiences. People can bid on unique experiences—like a cooking lesson, a private concert, or a customized art piece—and all proceeds go to BPAN research. Don't forget to check for guidance here first. Host a Virtual or In-Person "Pay It Forward" Event Organize a community event where people can offer services to one another in exchange for a donation to Action for BPAN. For example, you could have a "skills exchange" where people donate their time and talents, and in return, they make a contribution to the charity. Contact us today to discuss how we can work together to make a difference. Together, we can help bring hope to those affected by BPAN and make meaningful progress in the search for a cure. How Your Efforts Can Help Your fundraising will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. Your efforts will truly help us to raising awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help you on your fundraising journey! Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising idea a reality! Select the option 'Fundraising' to talk to us about your idea or query! First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Honor a loved one by making a donation in their memory to support Action for BPAN’s mission. Your contribution helps fund vital research and provides hope to families affected by BPAN. Make a Donation In Memory Action for BPAN would be honoured to receive donations in memory of loved ones. We understand that losing someone can be a difficult time and would be honoured to be a part of the celebration of their life. Thank you for considering this heartfelt gesture. Donate in Memory of a Loved One At Action for BPAN, we are deeply touched to receive donations made in memory of those we have lost. We understand that the loss of a loved one can be an incredibly difficult and emotional time. A donation in their name can offer a sense of comfort and a meaningful way to honour their life and the love they brought into the world. Your thoughtful gift will directly contribute to funding critical research and provide hope for a cure or treatment for those affected by this rare and devastating condition. please let us know if you would be happy for us to include a picture and message of remembrance along with our heartfelt thanks. Please get in touch We understand that donating in memory of a loved one is a deeply personal and heartfelt gesture. We would be honored to have a conversation with you to explore how we can make this tribute as meaningful and special as possible Our team is committed to supporting you throughout this process, we are here to guide you every step of the way. Please don't hesitate to reach out to our compassionate team to discuss your options and how you can make a meaningful impact on the future of BPAN research and support. First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Discover creative ways to fundraise for Action for BPAN in your workplace. Explore fun initiatives and ideas that support our mission to fund research and give families affected by BPAN hope. Fundraise at Work Fundraising at work is a great way to connect with your team/colleagues, build camaraderie, and create impactful change! With creativity and enthusiasm, you can make it fun and inspiring. Take the first step - plan your event today! Take Some Inspiration! Set up Your Fundraising Page Be sure to register your fundraising with us at the bottom of this page and share your story across social media along with plenty of photos to make your page truly stand out! To make organising your sponsorship simple and effective, we recommend using an online fundraising platform like JustGiving . Not only does it streamline the donation process, but it also allows us to claim Gift Aid - an additional 25% on eligible donations from UK taxpayers. This means that a £10 donation could be worth £12.50 at no extra cost to the donor! You can easily share your fundraising page with a JustGiving link or QR code to encourage even more people to support your efforts. If you need any support with any of this please just ask us, we are here to help. Coffee and Cake Break Take a break from work with a classic coffee morning! Set a date, spread the word and get baking. you can even choose a theme, or make it a bake-off competition? Matched giving Not only will this significantly boost your total, helping you hit your target, but it will also double the impact of your efforts for Action for BPAN. It’s a win-win and your employer will share in the satisfaction of making a real difference. Dress up/Down Day Why not mix things up and ask your colleagues for a donation while dressing down, dressing as your teenage self or don fancy dress? You could also get creative and plan other fundraising activities to increase your total on the same day. Any ideas? Physical Challenges Gather your colleagues and organize a sponsored physical challenge for a BPAN. From a sponsored walk to more daring adventures like mountain climbing, you'll not only raise essential funds for Action For BPAN but also strengthen your team's bond. Lunch Time or After Work Quiz Looking for a fun and competitive way to raise money for charity? Look further than hosting a quiz! Whether virtual or in person, Get ready for a social and entertaining event that's sure to make a difference! Raffle Off A Duvet Day Raffle off the chance to win an extra day’s holiday! this is an office fundraising idea that's sure to pique your colleague’s’ interest Book Sale Ask your colleagues to donate their old books and organize to office book sale! as a simple and cost-effective way to fundraise and find your next good read! Office Baby Photo Competition Ask your colleagues to bring in a photo of themselves as a baby, then charge colleagues to guess who’s who. You could even give a prize to more exciting! Sweepstake Whether it’s the Grand National, Football, Wimbledon, Eurovision or the next series of Strictly, charge £2 per name and split the prize pot with the winner and Action For BPAN. See guidance for sweepstakes here Give Something up For BPAN Old-school fundraisers can be the most effective! Consider challenging your colleagues to give up things they usually cant go without for a day, a week, or month, such as chocolate, social media, or post-work drinks. Office Olympics Who will take the gold in speed typing, synchronised chair swivel or paper aeroplane throwing? There’s plenty of fun game ideas to showcase your office Olympics prowess with the added bonus of fundraising for charity! Give as you earn Lots of companies offer fantastic payroll-giving schemes to enable employees to give to their chosen charity tax free directly from their salaries. Consider signing up and encourage colleagues to do the same. It will make an enormous difference to Action for BPAN! How Your Efforts Can Help Your fundraising will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. By organising events in the workplace, employees can come together to raise awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help you on your fundraising journey! Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising idea a reality! Select the option 'Fundraising' to talk to us about your idea or query! First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

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