Search Results

✨ What a day to remember! ✨ On Saturday 21st of June, 43 incredible people came together to climb Mount Snowdon  in support of Action for BPAN . It was no small feat, the mountain was relentless at times, but what shone even brighter than the challenge was the unity, strength, and love shared among the families and supporters who made the journey. From the moment we gathered at the base, there was a sense of something bigger than all of us. The hugs, the group photos, the children’s laughter, it was emotional, hopeful, and filled with purpose. Each step we took was for the children we love, for their futures, and in support of the urgent research we are so desperate for. Among the group were also some amazing young climbers aged 15, 13, and 12 years old who showed unbelievable resilience and determination. They inspired us all. Together, this was not just a climbing a mountain, but a symbol of what this community is capable of. Every parent, friend, grandparent, and supporter who took on this challenge gave so much, arranging childcare, travelling long distances, taking time off work, and stepping far outside their comfort zones, all to stand in solidarity with families affected by BPAN. Thanks to this amazing effort, and the generosity of so many who donated, shared, and cheered us on from afar, we’ve raised an incredible £31,821 so far , with an additional £5,559 in Gift Aid . That’s over £37,000 for research and action! This achievement shows what we can do when we come together. To everyone who climbed, fundraised, or supported from afar Thank you! From the bottom of our hearts. 💙🩷 And to those who are still planning to complete their climb at a later date good luck! We’ll be cheering you on every step of the way! This climb may be behind us now, but the mountain ahead, funding effective treatments and a cure for BPAN is one we continue to face. Knowing we’re not climbing it alone makes all the difference. 👉 https://www.justgiving.com/campaign/stepupforbpan?utm_medium=CA&utm_source=CL #StepUpForBPAN #ClimbForACure #ForeverGrateful #ActionForBPAN #BPANFamily

Bella Sniffing Out Golf Balls To Change Lives ⛳️ It Been A Busy Few Months But We Have To Take A Moment To Celebrate Some Of Our Incredible Fundraisers For 2025 So Far! At Action for BPAN , we are constantly blown away by the kindness, creativity, and determination of the families, schools, and individuals who step up to support our mission. Over the past few months, we’ve seen a wave of inspiring fundraisers from all corners of the UK and beyond all united by one shared goal: to bring hope, awareness, and progress to families living with BPAN. Here are just a few of the amazing efforts we’ve been so proud to share: 💙 A Record-Breaking Effort at Claires Court Juniors Even though Maxi has now moved on to senior school, his incredible junior school is still  fundraising to help his sister Emily and others like her. A huge heartfelt thank you  to the wonderful students, parents, and teachers at Claires Court Juniors  for your unwavering support. You didn’t just show up... you set a school record  for the most money ever raised for charity! We were so proud to join you in assembly and speak about the power of standing up for what you believe in. Your compassion, energy, and belief in making a difference will stay with us always. 👏💙🩷 🍫 Kamala’s Cacao Wellness Day The wonderful Kamala's  brought together community, wellness, and love in the most beautiful way. She generously donated 100% of the profits from her cacao offerings  during a special wellness day, all in support of Action for BPAN. This act of generosity not only raised valuable funds but also raised awareness in such a heart-centred and meaningful space. Thank you for turning your passion into purpose. 💫💙🩷 🏃‍♀️ Suzanne Runs the London Marathon Running a marathon is no small feat and Suzanne  did it with determination, strength, and so much heart. She completed all 26 and a bit miles of the London Marathon!! and we are in awe  of her achievement. Suzanne, thank you for pushing through every mile and raising awareness on one of the biggest stages in the world. You’ve inspired us all, and we’re beyond grateful for your courage and commitment. 🏅💙🩷 ⛳️ Bella and Ray’s Golf Ball Mission for BPAN Ray and his brilliant Pooch Bella , have turned a love for treasure hunting into a powerful act of kindness! They’ve been out collecting lost golf balls and selling them all to raise funds in support of their beloved Great Niece, who lives with the daily challenges of BPAN. We are in awe of their dedication and love. Special thanks to Marguerite for capturing and sharing this beautiful story. Every act of kindness like this brings us closer to a brighter future. 💙🩷 🎯 Charlotte’s Creative Fundraising A shoutout to Charlotte Brown  and her amazing friends and family for raising funds through their fun-filled shooting event ! We love seeing creative fundraising in action and are so grateful for your support. Thank you for helping us spread awareness and drive change for everyone affected by BPAN. 👏💙🩷 🧠 Piper’s Physiotherapy Has Our Back We’re sending a big thank you to Piper’s Physiotherapy  for your generous donation of 10% of all your bookings throughout April! Every kind gesture counts and yours means so much to our small but mighty community. ❤️ 🏔 S teven Conquers North Africa’s Highest Peak Steven  has pushed himself to the limit and conquered the highest mountain in North Africa  to raise awareness and funds for BPAN. His courage and strength mirror those of the families we support , and we couldn’t be more proud to have him on our team. Thank you Steven! 🙌💙🩷 🏊‍♂️ Ant’s 100-Mile Swim for Poppy One of our incredible Dadvocates , Ant, has made a splash! He’s committed to swimming 100 miles in 2025  in honour of his beautiful daughter, Poppy, and has truly inspired us with his drive and dedication. Ant, we’re cheering you on every stroke of the way. Keep going, you’re doing amazing! 💪🏻🩷💙 you can still cheer Ant on and him some by donating to his page https://www.justgiving.com/page/bpan100mileswim Every Action Matters These incredible stories remind us that every fundraiser, every step, and every act of kindness  matters. Together, we are raising vital awareness, funding crucial research, and showing families living with BPAN that they are not alone! If you’ve been inspired by any of these amazing people, why not start your own fundraiser? From bake sales to mountain climbs, every action helps us move closer to better treatments, a cure, and a world where every child with BPAN has the chance to thrive. Thank you to each and every one of you for joining us, we are stronger together and.. we are forever grateful! 💙🩷 #ForeverGrateful #ActionForBPAN #BPANCommunity #FundraisingHeroes

Join us for our first official fundraiser to climb up Snowdon to support BPAN research! Help raise awareness and funds for this rare condition as we conquer the mountain together. Every step brings us closer to a cure. #actionforbpan #stepupforbpan We are thrilled to launch our first fundraiser for Action for BPAN on 21st June 2025! Born from both grief and necessity, our charity is the first of its kind in the UK, dedicated to raising vital funds for research into treatments and a cure, supporting families living with BPAN, and being a strong voice for our girls and children like them. Beta-propeller protein-associated neurodegeneration (BPAN) is a diagnosis we have both received for our daughters, Isabella and Emily. From that initial moment of devastation, we managed to find one another and, together, discover hope in what first felt like an utterly hopeless situation. So, what is BPAN? BPAN is a rare and devastating condition that impacts every aspect of a child’s life. Its symptoms are heartbreaking: as iron builds up in their brains, children with BPAN often lose their ability to walk, talk, and move. They endure complex, prolonged seizures, severe motor difficulties, and cognitive decline. As the condition progresses, they also develop symptoms of Dementia and Parkinson’s disease—illnesses typically associated with old age. Watching our daughters, and other children like them, face these challenges at an age when they should be playing and carefree is truly devastating. It’s a future we simply refuse to accept. Thanks to Kelly’s incredible fundraising efforts, over £100,000 has already been raised. This has helped fund the initial stages of ground breaking gene therapy research at Great Ormond Street Hospital. This pioneering work offers hope for a potential cure that could transform the lives of children like Isabella and Emily. This is where we need your help. This year, we’re taking on our first major fundraising challenge: climbing Snowdon. This climb isn’t just for Isabella and Emily, but for every person and family affected by BPAN. It’s our chance to raise the vital funds needed for research and to spread awareness of this devastating condition. This climb symbolises our determination to never stop fighting—for our daughters, for every child with BPAN, and for every family who feels as lost and helpless as we once did. But we can’t do it alone. We need your help. Together, we can make a difference. Together, we can give Isabella, Emily, and all BPAN children the future they deserve. Please step up for BPAN and climb for a cure—because every step brings us closer to life-changing treatments. Whether you donate, share our story, or join us as a fundraiser on the climb, your support matters— every step counts.. Please join us and donate if you can at https://www.justgiving.com/campaign/stepupforbpan Please share, follow, and spread the word about Action for BPAN #actionforbpan #stepupforbpan #forevergrateful Thank you so much! Kelly Sayers & Nicole Harper Co-founders of Action for BPAN & Mums of Emily and Isabella If you are one of the many who would like to get involved in joining us for the climb then please get in touch and see the below information pack.

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

Action for BPAN Website Data Protection Policy Data Protection Policy Data Protection Policy - need to check 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

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. Step Up For BPAN Thank you for your interest in joining us for our Mount Snowdon fundraiser! Your support means the world to us and will make a real difference in advancing research and support for BPAN. Navigating BPAN can be isolating so we hope the event will also be a chance to bring our community together and form new friendships! Here’s everything you need to know to get ready... What you need to know! 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