Action for BPAN's Research Support Framework: learn about how we support research on BPAN and project eligibility criteria Research Support Framework Action for BPAN accepts research grant applications on a rolling basis focused on Beta-propeller protein-associated neurodegeneration (BPAN)/WDR45 research. Applications are reviewed by the charity's scientific advisory process and awarded based on scientific merit, patient impact and feasibility. Please note that unsolicited proposals from individuals not affiliated with recognised research institutions will not be considered. Header / Introduction: Action for BPAN supports high-quality research focused on Beta-propeller protein-associated neurodegeneration (BPAN)/WDR45 research. Our aim is to advance scientific understanding and improve patient outcomes. Eligibility: We primarily consider enquiries from established academic or clinical researchers affiliated with recognised research institutions. Projects should be relevant to BPAN/WDR45 research and demonstrate clear scientific merit, feasibility, and potential patient impact. Application Process: Applications are invitation-only. Initial enquiries can be submitted via email to engage@actionforbpan.co.uk , where our team can confirm eligibility and provide further guidance. Full applications are reviewed by our independent Scientific Advisory Panel, which evaluates proposals based on: Scientific rigor and methodology Relevance to BPAN or WDR45 Potential impact for patients and families Feasibility within the proposed timeframe and resources Funding Decisions: All funding decisions are documented and made solely on the basis of scientific and patient-focused merit. Action for BPAN maintains transparency and fairness throughout the process. Contact for Enquiries: Researchers meeting the eligibility criteria may contact us to discuss their project and request the application pack: Email: engage@actionforbpan.co.uk Get in touch! At Action for BPAN, we are always ready to help. If you have any questions or concerns, please feel free to reach out to us anytime. 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

Action For BPAN Weekly Lottery Your Chance to WIN £25,000 Each £1 entry helps Action for BPAN fund vital research and provide essential support, bringing us all one step closer to a cure. Where else could £1 do so much? Play Now As well as the chance to win big, 50p of every £1 played in the lottery supports Action for BPAN to fund critical research into BPAN and support families living with this rare and life-limiting condition. Your entry helps bring us closer to better understanding BPAN, developing treatments, and ultimately a cure. It also ensures families have access to the support, information, and community they need, so no one faces BPAN alone. Its Easy to Play It’s really simple to get started, all you need to do is enter your details, choose the way you want to pay and then select your number of entries. It costs just £1 per entry. Submit your details and we will send you your lucky numbers. For every £1 you play each week, you’ll receive a unique 6-digit lottery number. Winning numbers are revealed each week, match your numbers to win up to £25,000. Every Friday a winning number is drawn at random. Winners have to match 3, 4, 5 or all 6 digits of the winning number in the correct place in the sequence. The lucky winners are sent their prizes automatically each Friday. So if you win a prize you’ll automatically receive it! Play Now What Are My Chances Unity offers the best odds of any platform of its kind. Because it’s a number match game, the odds are fixed. This means that no matter which charity you’re supporting, or how big their lottery is, every lottery number has an equal chance of winning a prize. 3-digit match = 1 in 69 4-digit match = 1 in 823 5-digit match = 1 in 18,518 6-digit match = 1 in 1,000,000 How does it work? The lottery is a number match game using a random number generator. If your digits are in same positions as the digits in the six-digit winning number sequence, you win a prize 3-digit match = 5 entries into the next draw 4-digit match = £25 5-digit match = £1,000 6-digit match = £25,000 Play Now

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.

Learn how you can make a lasting impact by leaving a gift in your will to support Action for BPAN’s mission to fund research and provide hope for families affected by BPAN. Leave a Gift in Your Will Leave a legacy of hope by including Action for BPAN in your will. By including Action for BPAN in your legacy, you ensure that your commitment to making a difference continues for future generations. Every gift, no matter the size, helps us move closer to our goal of transforming lives. Leave a Lasting Legacy At Action for BPAN, we are committed to raising awareness and funding critical research to find a cure for Beta-propeller protein-associated neurodegeneration (BPAN). By leaving a gift in your will, you can help us continue this vital work and make a lasting difference in the lives of children and families affected by BPAN. Why Your Gift Matters BPAN is a rare and devastating genetic disorder with no current cure. Every day, families living with BPAN face the heartbreaking reality of progressive neurodegeneration. With your support, we can fund pioneering research, raise awareness, and bring us closer to finding a cure. A gift in your will can help ensure that we continue the fight for these children and families, long into the future. How Your Gift Will Make a Difference Your generosity will directly contribute to: Funding BPAN Research: Grants for cutting-edge research that could lead to a treatment or cure for BPAN. Raising Awareness: Increasing public understanding of BPAN to promote early diagnosis and advocacy. Supporting Families: Providing vital support to families facing the challenges of BPAN. Types of Gifts You Can Leave There are different ways to leave a gift to Action for BPAN in your will: A Residuary Gift: A percentage of your estate after other bequests are made. A Pecuniary Gift: A specific amount of money. A Specific Gift: A particular asset, such as property or shares. A Conditional Gift: A gift made upon the occurrence of a specific event. How to Include Action for BPAN in Your Will Including Action for BPAN in your will is simple. You can either: Work with your solicitor: We recommend consulting with a solicitor to ensure your wishes are clearly outlined. Add a codicil: If you already have a will, you can make a simple addition (codicil) to include your gift. We can provide you with the necessary wording for your will or codicil, so you can be sure your gift reaches us exactly as you intend. Thank You for Your Generosity By leaving a gift in your will to Action for BPAN, you are helping to create a future where BPAN no longer destroys the lives of children and families. Your legacy will be one of hope, compassion, and progress. If you would like more information about leaving a gift in your will or need assistance, please don't hesitate to contact us. We are here to support you every step of the way. Together, we can make a difference that lasts a lifetime. 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. The money you raise will be used to fund research and clinical trials. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the 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 discuss with our compassionate team the process of leaving a donation in memory or in a will! Select the option 'Donation' to talk to us about this! 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

Read Action for BPAN's accessibility statement to learn how we ensure our website is inclusive and accessible to all users, providing equal access to information and resources. Accessibility Statement Accessibility Statement for Action for BPAN Last updated: 31/01/2024 At Action for BPAN, we are committed to ensuring digital accessibility for all users, including those with disabilities. We continuously work to improve the user experience and apply relevant accessibility standards. Measures to Support Accessibility Regular Testing: Our website has been evaluated using Google's Lighthouse tool, achieving an accessibility score of 92. This reflects our ongoing efforts to make our content and features accessible. Use of ARIA: We recognize areas for improvement, such as the proper usage of ARIA attributes and ensuring accessible names for interactive elements like buttons and links. Sequential Navigation: Adjustments are being made to ensure headings are in a sequentially descending order to enhance keyboard navigation. Areas for Improvement While we have passed 27 automated accessibility audits, we acknowledge there are still opportunities to enhance the website: Some interactive elements lack accessible names. Prohibited ARIA attributes are present on a few elements. Further manual testing is needed to identify and address any additional barriers. Feedback and Contact Information We welcome your feedback on the accessibility of our website. If you encounter accessibility barriers or have suggestions, please contact us at actionforbpan@gmail.com . Commitment to Improvement We are committed to ongoing improvements and plan to regularly review and update our website's accessibility features. Action for BPAN Westfield Lodge, Old Mill Lane, Bray, Maidenhead, SL6 2BG actionforbpan@gmail.com Registered charity number: 1210529

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

Read Action for BPAN’s terms and conditions to understand the guidelines for using our website and engaging with our charity. Stay informed on our policies and your rights. Terms and Conditions Terms and Conditions Last updated: 31/01/2024 Welcome to the website of Action for BPAN (referred to as "we", "our", or "us"). By using this website, you agree to comply with and be bound by these Terms and Conditions. Please read them carefully. If you do not agree to these terms, you should not use our website. 1. Introduction Action for BPAN is a registered UK charity (Charity Number: 1210529) We are committed to providing support and information about BPAN to those who need it, raising awareness and supporting research into BPAN (Beta-propeller protein-associated neurodegeneration). These Terms and Conditions apply to the website www.actionforbpan.org.uk and any associated services we provide through the site, including donations, event registrations, and communications. 2. Use of Our Website By accessing or using our website, you agree to: Use the website in compliance with all applicable laws and regulations. Provide accurate, current, and complete information when filling out any forms on the site, such as donation forms or event registrations. Not use the website for any illegal or unauthorized purpose, including, but not limited to, uploading or distributing malicious content. We reserve the right to suspend or terminate access to the website at our discretion if these Terms are violated. 3. Donations By making a donation on our website, you agree to: Provide accurate and truthful payment details. Acknowledge that the charity will use the funds in accordance with our mission to advance BPAN research and to further Action for BPANs fundraising goals, unless otherwise stated for specific campaigns. Acknowledge that some donations may be subject to Gift Aid (if you are eligible and have opted in). Understand that donations made are non-refundable, except in exceptional circumstances. If you wish to request a refund, please contact us at actionforbpan@gmail.com . Gift Aid If you are a UK taxpayer, you can choose to Gift Aid your donation to Action for BPAN, which allows us to claim back 25p for every £1 you donate, at no additional cost to you. To ensure your donation qualifies for Gift Aid, please note the following: Eligibility: You must be a UK taxpayer, paying at least as much Income Tax and/or Capital Gains Tax as the amount we will reclaim on your donations in that tax year. Gift Aid Declaration: By ticking the Gift Aid box on our donation form, you are confirming that you wish to Gift Aid your donation and any future donations you make to Action for BPAN. You also confirm that you meet the eligibility criteria outlined above. Tax Liability: It is your responsibility to ensure that the information you provide is accurate and up-to-date. You must inform us if you no longer pay sufficient tax to cover the amount of Gift Aid we reclaim. Refunds: If you request a refund for your donation, Gift Aid may not apply to the refunded amount. Multiple Donations: If you choose to Gift Aid your donation, this applies to both one-off and regular donations unless you inform us otherwise. Contact Information: If your circumstances change and you wish to cancel or update your Gift Aid declaration, please contact us at actionforbpan@gmail.com . Why We Need Your Details for Gift Aid To claim Gift Aid, we need to know the following information: Full name Address (including postcode) Declaration of tax eligibility (via the Gift Aid checkbox on the donation form) 4. Payment Processing All payments are processed securely via our third-party payment providers, including [PayPal/JustGiving/etc.]. By using these services, you agree to their terms and privacy policies. We do not store or process your payment details directly. 5. Intellectual Property The content on this website, including text, images, logos, and other materials, is owned by Action for BPAN or licensed to us. You may not use, reproduce, or distribute any content from this website without prior written permission, except for personal, non-commercial use. 6. Privacy and Data Protection Your privacy is important to us. Please refer to our Privacy Policy to understand how we collect, use, and protect your personal data. By using this website, you consent to our data practices as outlined in the Privacy Policy. 7. Cookies We use cookies on our website to enhance user experience and improve our services. For more information about the cookies we use and how to manage them, please refer to our Cookie Policy. 8. External Links Our website may contain links to third-party websites. These links are provided for your convenience, and we are not responsible for the content or privacy practices of those websites. If you click on a third-party link, you do so at your own risk. 9. Limitation of Liability We take all reasonable steps to ensure that the information on our website is accurate and up to date. However, we do not warrant the accuracy, completeness, or reliability of any information on this site. In no event shall Action for BPAN be liable for any direct, indirect, incidental, special, consequential, or punitive damages arising from your use of this website, including errors, omissions, or delays in the information provided. 10. Governing Law These Terms and Conditions are governed by and construed in accordance with the laws of the United Kingdom. Any disputes arising under or in connection with these Terms shall be subject to the exclusive jurisdiction of the courts of the United Kingdom. 11. Changes to Terms and Conditions We reserve the right to update or modify these Terms and Conditions at any time. Any changes will be reflected on this page with an updated date. Your continued use of our website after such changes constitutes acceptance of the revised Terms. 12. Complaints and Feedback If you have any concerns or complaints about our website or services, please contact us at actionforbpan@gmail.com . We will review your complaint and respond as soon as possible. 13. Contact Information For any questions regarding these Terms and Conditions, please contact us at: actionforbpan@gmail.com Action for BPAN Westfield Lodge, Old Mill Lane, Bray, Maidenhead, SL6 2BG actionforbpan@gmail.com Registered charity number: 1210529

Action for BPAN Website Data Protection Policy Data Protection Policy Data Protection Policy - Last updated: 31/01/2024 Action for BPAN ("we", "our", "us") is committed to protecting and respecting the privacy and confidentiality of all personal data we process. As a registered charity in the UK, we aim to comply with the Data Protection Act 2018 and General Data Protection Regulation (GDPR). This Data Protection Policy explains how we collect, use, store, and protect your personal data when you visit our website www.actionforbpan.org.uk ("our site") and engage with our services. 1. Purpose of the Data Protection Policy The purpose of this policy is to outline how Action for BPAN processes personal data to ensure compliance with UK data protection laws. We are committed to safeguarding the privacy of individuals and the confidentiality of their personal data. 2. Scope of the Policy This policy applies to all personal data collected, processed, and stored by Action for BPAN, including but not limited to: Individuals who donate to the charity or sign up for events. Individuals who sign up for communications such as newsletters or updates. Individuals who interact with us via our website or other communication channels. 3. Data Controller The Data Controller for the purposes of this policy is Action for BPAN, which determines how and why your personal data is processed. Contact Information: Action for BPAN actionforbpan@gmail.com Westfield Lodge, Old Mill Lane, Bray, Maidenhead, SL6 2BG Registered charity number: 1210529 4. What Personal Data We Collect We may collect the following types of personal data: Personal Identification Information: Full name, contact details (email, phone number, postal address). Payment Information: Credit/debit card details and other payment information for processing donations. Donation Data: Information about donations, including amounts, frequency, and method of donation. Event Registration Data: Details of events or campaigns you participate in. Communication Data: Information you provide when you sign up for our newsletters, respond to surveys, or communicate with us. Technical Data: Information on how you use our website, such as IP address, browser type, and pages visited. 5. How We Use Your Personal Data We use your personal data for the following purposes: To process donations: To process and confirm your donations, provide receipts, and manage Gift Aid claims. To send communications: To send you updates, newsletters, and information about our activities, events, or campaigns. You may opt out of these communications at any time. For event management: To manage registrations for events or volunteer opportunities. To improve services: To analyse and improve the functionality of our website and services. For legal compliance: To comply with legal obligations, such as Gift Aid reporting and other regulatory requirements. 6. Legal Basis for Processing Your Data We process your personal data based on the following legal grounds: Consent: When you have given us explicit consent to process your data, such as when you subscribe to our newsletters or opt-in to communications. Contractual necessity: For processing donations or event registrations. Legal obligation: When we are required to process data to comply with legal requirements, such as claiming Gift Aid. Legitimate interests: For activities that are in our legitimate interests, such as direct marketing or fundraising, provided these interests do not override your rights and freedoms. 7. How We Protect Your Data We take appropriate measures to protect your personal data, including: Using encryption technologies to safeguard sensitive data, such as payment details. Ensuring that only authorized staff have access to personal data. Regularly reviewing our security practices to prevent unauthorized access, alteration, disclosure, or destruction of your data. Although we implement robust security measures, please note that no system is 100% secure. While we strive to protect your data, we cannot guarantee its absolute security. 8. Sharing Your Personal Data We do not sell, rent, or lease your personal data to third parties. However, we may share your data in the following circumstances: Service providers: We may share data with trusted third-party service providers who assist with payment processing, event management, and communication delivery. These third parties are required to keep your data confidential and use it only for the purposes for which it was provided. For Gift Aid claims: We may share your data with HMRC for claiming Gift Aid on eligible donations. For legal reasons: We may disclose your data if required by law or if necessary to protect our rights, safety, or the safety of others. 9. Your Rights Over Your Personal Data Under the UK Data Protection Act 2018 and GDPR, you have the following rights regarding your personal data: Right of access: You can request a copy of the personal data we hold about you. Right to rectification: You can ask us to correct any inaccurate or incomplete data we hold about you. Right to erasure: You can request that we delete your personal data, subject to certain legal exceptions. Right to restrict processing: You can ask us to limit how we process your data. Right to data portability: You can request a copy of your data in a machine-readable format to transfer to another organization. Right to object: You can object to certain types of data processing, such as marketing communications. Right to withdraw consent: You can withdraw any consent you have given for data processing at any time. To exercise these rights, please contact us at [email/contact information]. 10. Data Retention We will only retain your personal data for as long as necessary to fulfill the purposes outlined in this policy, or as required by law. Once your data is no longer needed, it will be securely deleted or anonymized. 11. Cookies We use cookies to enhance your experience on our website. Cookies are small text files that are placed on your device and help us analyze website traffic and improve functionality. You can control the use of cookies by adjusting your browser settings. However, please note that blocking certain cookies may affect the website’s functionality. For more detailed information about cookies, please refer to our Cookie Policy. 12. Third-Party Websites Our website may contain links to third-party websites. These sites have their own privacy policies, and we are not responsible for how they collect, use, or protect your personal data. We encourage you to review the privacy policies of any third-party websites before providing them with your personal information. 13. Changes to This Policy We may update this Data Protection Policy from time to time to reflect changes in our practices, legal requirements, or technology. Any changes will be posted on this page, and the "Last Updated" date at the top of the policy will be revised. 14. Contact Information If you have any questions about this Data Protection Policy or how we handle your personal data, please contact us: Action for BPAN Westfield Lodge, Old Mill Lane, Bray, Maidenhead, SL6 2BG actionforbpan@gmail.com Registered charity number: 1210529

If you're thinking about fundraising for Action for BPAN, take a moment to read the fundraising disclaimer to understand the rules of fundraising and ensure compliance with the Fundraising Regulator. Fundraising Disclaimer Last updated: 31/12/2024 Fundraising Disclaimer for Action for BPAN By fundraising on behalf of Action for BPAN, you agree to the following: Compliance with UK Charity Law and Fundraising Regulations: You agree to comply with all relevant UK charity laws, including the Charities Act 2011 and the Fundraising Regulator’s Code of Fundraising Practice. This includes obtaining any necessary permits, licenses, or permissions for your fundraising activity. You must not engage in any illegal or unethical fundraising activities. Use of Funds: All funds raised must be transferred directly to Action for BPAN and used in accordance with the charity's objectives. You agree to keep accurate records of donations and ensure funds are handled responsibly. Fundraising Transparency: You agree to be transparent in your fundraising efforts. Donors must be made aware that they are donating to Action for BPAN. If any fundraising costs or expenses are incurred, these must be clearly communicated to donors beforehand. Data Protection and Privacy: You agree to comply with the Data Protection Act 2018 and GDPR (General Data Protection Regulation). Personal data collected during fundraising must only be used for the purpose of the fundraising activity and handled securely. Donors’ personal information must not be shared without consent. Use of Charity Name and Branding: You must seek Action for BPAN’s prior approval before using the charity's name, logo, or any branding. All fundraising materials must be approved to ensure they are aligned with our charity’s values and messaging. Health and Safety: You agree to comply with all relevant health and safety regulations for any events or activities. You are responsible for ensuring the safety of participants and the public during fundraising activities. Fundraising via Online Platforms: If you are fundraising through third-party platforms (e.g., JustGiving, Facebook), you must ensure that these platforms are authorized and comply with UK fundraising regulations. Where possible, you should use Action for BPAN’s official donation channels. Accountability and Reporting: You agree to report the total funds raised and ensure they are sent to Action for BPAN in a timely manner. If requested, you must provide evidence of the funds collected and any associated costs. Refund Policy: If a donor requests a refund, you must inform them that they should contact Action for BPAN directly for assistance, as all donations are processed through the charity. Non-Misrepresentation: You will not make any false or misleading claims about Action for BPAN or its activities. All representations of the charity must be accurate and truthful. Thank you for your support. Your fundraising helps us to raise awareness and support for BPAN. If you have any questions or concerns please contact us at: actionforbpan@gmail.com Action for BPAN Westfield Lodge, Old Mill Lane, Bray, Maidenhead, SL6 2BG actionforbpan@gmail.com Registered charity number: 1210529

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

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 patient day at GOSH 2026 VEIW GALLARY Step Up For BPAN Snowdon 2025 VEIW GALLARY AFB Golf Day 2025 VEIW GALLARY Wellness Day 2025 VEIW GALLARY The Marvellous Festival 2025 VEIW GALLARY Fundraising photos

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Thank you for supporting Action for BPAN! Your generosity helps fund vital research and provides hope to families affected by BPAN. Together, we’re making a difference. Thank you, Donor Name We are so grateful for your generous donation of £0. Your donation number is #1000. You’ll receive a confirmation email soon.

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