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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

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. 1/9 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 Action For BPAN Gallery 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 Isabella and Emily are just two of the many amazing children living with BPAN Discover more of the inspiring family stories that make our community so special Family Stories 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 LATEST POSTS 1 2 3 4 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

Meet the BPAN community: families share personal stories, the challenges and joys, giving a window into their children's lives Meet Our Community Each story you read here is a glimpse into a life filled with resilience, love, and incredible strength. These children face daily struggles that most of us cannot imagine, yet they continue to shine bright. We are deeply grateful to the families who have chosen to share their experiences, helping us to raise awareness of BPAN and the urgent need for a cure and treatments. Sharing our children’s journeys is not easy, it means opening our hearts and inviting the world into our children's realities. But we do it because awareness brings action, and action fuels the fight for a cure Please read with kindness, hold their stories in your heart, and, if you can, support our mission to fund the vital research that could change their futures. Every donation, no matter how small, brings us closer to the breakthrough these children have been waiting so patiently for Meet Olivia aka Liv Liv is 11 years old Liv likes Water S and School Books Animals Sensory & Spinning Objects Liv Dislikes Loud Places Parks New Places People Shouting Changes of Routine Face Coverings (helmets, face masks, costumes, face paints ) A Bit About Liv 11-year-old Liv has been through a lot in her short life. We spent many years feeling puzzled by her illnesses and her lack of development. We saw a lot of different specialists, and no one could tell us why Liv was not hitting her milestones. By the age of 2, she was diagnosed with epilepsy after a few very scary trips to the hospital. Over the years, we have managed to get this under control after lots of back-and-forth hospital visits! At the age of 11, she is still not hitting milestones. She’s still not physically able to climb stairs, lift herself up off the floor, toilet, shower (etc.), or generally take part in many physical activities, as well as limited cognitive skills, talking, general understanding, fine motor skills, and challenges retaining information. These are the challenges that we face every day. It’s hard knowing that these challenging days will only get harder as time goes on, and she will lose even more ability than what she already has. Knowing what the future holds for BPAN children is heartbreaking, and as a family, we don’t look to the future, we take it day by day and celebrate the good days. Liv was only diagnosed 15 months ago with BPAN after a very gruelling time. So, for us as a family, this is still very raw, and there’s still a lot to digest and a lot to learn. However, she is the happiest, most sociable little girl, and everyone falls in love with her when they meet her. No matter what the future holds or what challenges we face with regression, I will always hold on to the fact that she is loved by so many! Written by Louise Liv's Mummy Every child with BPAN deserves a future filled with possibilities. Right now, promising research is underway, but it needs funding to continue progressing. Your donation, no matter the amount, brings us closer to a breakthrough that could change lives Donate A Bit About Me Meet Bertie Bertie is 4 years old Bertie Likes Cocomelon Music Mirrors Ball Pit Balls Cuddles Being Sang to Bertie Dislikes Medicine time which unfortunately is twice a day New people coming into his personal space A Bit About Bertie Bertie is known as the “healing baby” for brightening bad days with his gorgeous smile and joyful stims. He’s incredibly loving, gives the best cuddles and kisses, and delights in being held and sung to. Bertie is four years old and one of five siblings. He is a joyful boy despite significant challenges. Diagnosed with global developmental delay at nine months, he missed milestones like smiling, sitting, and rolling, and his mobility remains limited to this day. With the mental development of an eight-month-old and being non-verbal, Bertie cannot communicate his daily needs. He experiences 6–10 absent seizures daily, prompting extensive investigations. Bertie has been supported by numerous specialists, including physiotherapy, portage, neurology, and epilepsy care. We live in Canterbury, and there are no support groups or professional teams that can support him here—we have to travel to Great Ormond Street Hospital for help. Through my research, I discovered another mum in Australia who connected me to the Facebook group BPAN for Families. This has been a great source of support. Bertie has a mutated WDR45 gene, which prevents his body from clearing iron and waste from his brain and nervous system. This causes learning disabilities, epilepsy, and potentially dystonia in adolescence, which can progress to dementia, dystonia, and Parkinson’s, ultimately shortening his life. “He will more than likely never speak, walk, or be able to live on his own if this cure isn’t found before he hits puberty.” Day-to-day life can be a real challenge, impacting not just me and Bertie’s dad but also my other children. At first, we were unaware that Bertie had BPAN, and he had to undergo many tests. It wasn’t until February 2025 that we received an official diagnosis. I spent countless days and nights researching to find out what was happening to my son, desperate to find a solution to help him. I am a fixer, and the idea of my son suffering breaks my heart every day. It’s difficult that he is non-verbal and cannot express his needs. Bertie is unable to move around, so we have to lift him downstairs, into the car, into the wheelchair, and into the bathtub. This takes a physical toll on us, and some days, we are in so much pain that we cannot do it, limiting our ability to leave the house. When we do go out, I am limited in how much I can engage with my other children because Bertie needs me to be by his side, caring for him. It’s a real challenge as a large family. I just want to make all my children happy. “I don’t want to imagine my life without him. It’s the same for all of us—my kids will be lost without him.” Despite the sadness we experience and the fears of losing Bertie, we are truly blessed to have him as part of our family. Bertie has brought so much love to us all. He has taught us to be kinder, more patient, and more humble. We have all learned to love in new ways. He brings so much joy and character. Bertie is making progress—he can now roll toward whoever he wants and put his arms up to be held and kissed. This is a blessing in itself. We have so much love for him. Our main hope as a family is that this charity raises enough money to fund a cure. I am under no illusion that this treatment will be a miracle—he will still have severe learning disabilities—but we hope his cells will not die, and he will not develop dementia. I just hope this cure is found before he reaches stage two. We have ten years—there just needs to be a cure! I want to help my son, and I hope that even if a cure isn’t found, he stays his happy self, doesn’t suffer in pain, and knows how deeply loved he is. We must work together to find a cure for Bertie and children like him. BPAN is such a rare condition, affecting fewer than 500 people worldwide. It causes progressive damage to the nervous system, leading to a range of distressing symptoms that gradually worsen over time. Professor Manju Kurian of UCL Great Ormond Street Institute of Child Health is developing a gene therapy for children with BPAN. She hopes this will ultimately lead to a safe and effective treatment that can help slow disease progression-transforming the lives of children born with this debilitating condition. We need your support. We are asking for your help in raising funds for crucial BPAN research. Every donation brings us one step closer to finding a cure. Please consider donating today to help children like Bertie have a chance at surviving this heartbreaking condition. Thank you for your support. Written by Emilee Bertie's Mummy Every child with BPAN deserves a future filled with possibilities. Right now, promising research is underway, but it needs funding to continue. Your donation, no matter the amount, brings us closer to a breakthrough that could change lives. Donate Meet Scarlett Scarlett is 4 years old Scarlett Likes Singing Dancing Dressing up Drawing Playdoh Playing with dolls Scarlett Dislikes Loud environments Changes of routine A Bit About Scarlett Scarlett is four years old – our beautiful, happy, funny and wonderfully cheeky little girl who lights up our world. Just before her first birthday, Scarlett experienced her first prolonged seizure. At the time, we were reassured it was “just” febrile, and life carried on much as normal. But in October 2022, she suffered her third and most serious seizure, lasting an hour. That was the turning point. Scarlett was referred for genetic testing and an MRI, and in January 2023 we received the devastating news that changed our lives forever – Scarlett has a rare neurological condition called BPAN. Since then, our priorities have shifted. We try not to dwell on what the future may hold, but instead pour our energy into making Scarlett happy every single day. She has recently started school, and we treasure every moment – from her laughter in the playground to family days out creating memories we’ll cherish forever. Scarlett’s strength and joy inspire us daily, and as a family we are determined to make her life as rich and full as possible. Connecting with other parents whose children share this condition has given us renewed hope and purpose. Together, we’re working to raise awareness and fund vital research so that one day there may be a cure for Scarlett and others like her. Thank you so much for your support. Written by Louise Scarlett's Mummy Every child with BPAN deserves a future filled with possibilities. Right now, promising research is underway, but it needs funding to continue progressing. Your donation, no matter the amount, brings us closer to a breakthrough that could change lives Donate Meet Musa Musa's family have chosen to share this beautiful art work created by their son Musa is 8 years old Musa Likes Sensory lights and colourful Light projectors Listening to stories and calming sounds Gentle massage to his hands feet and head Having snuggles with his parents and siblings Going to school and seeing his friends Soft gentle voices close to his ear Musa Dislikes Loud or sudden noises Being in a wet nappy Spending to long in his wheelchair Long Hospital admissions or stays away from home A Bit About Musa Our son Musa is eight years old. He is the youngest in our family, the cherished twin of his brother Harun, and the little brother of two older siblings who love and adore him. Musa is the soul of our family – our light. His patience and resilience inspire us every single day, teaching us strength, love, and perseverance. Musa lives with a rare condition called BPAN (Beta-propeller Protein-Associated Neurodegeneration). BPAN is caused by a change in the WDR45 gene and leads to progressive damage in the brain and nervous system. It affects Musa in many ways. He is non-verbal, unable to move independently at all, and suffers from seizures and now dystonia. He also has progressive scoliosis, which adds to his discomfort and medical needs. Musa relies on a PEG-J feeding tube, oxygen overnight, and requires regular deep suctioning to keep his airway clear. He also needs regular medications throughout the day to help manage his symptoms. Hospital visits, medical care, and constant monitoring are part of our daily life. Despite these challenges, Musa brings joy and warmth to everyone around him. He loves lights and musical sounds, which never fail to make him smile. Being with his siblings brings him comfort, and his presence fills our home with love. But BPAN is a cruel condition. It is neurodegenerative, meaning it worsens over time. As children with BPAN grow, they gradually lose skills, face increasing disability, and require ever more care. For families, it is heartbreaking to watch. This is why gene therapy means so much to us. Unlike treatments that only manage symptoms, gene therapy could target the root cause of BPAN. It has the potential to slow or even stop progression, reduce seizures, and help better manage Musa’s movement disorders. For Musa, gene therapy could mean stability instead of decline, fewer seizures, and more opportunities to live his life with dignity and joy. For us as a family, it means hope – the chance for Musa’s light to shine with us for longer. Thank you so much for your support. Written by Shewley Musa's Mummy Every child with BPAN deserves a future filled with possibilities. Right now, promising research is underway, but it needs funding to continue progressing. Your donation, no matter the amount, brings us closer to a breakthrough that could change lives Donate

Explore how Action for BPAN supports the BPAN community with resources, insights, and support calls. Discover ways you can support Action for BPAN and its mission to create a brighter future. Here's how you can support us: You can personally make a huge difference for Action for BPAN in three powerful ways: You can F undraise by hosting events or activities to support our cause. Help spread awareness by S haring our mission and stories to inspire others. Or most importantly, you can Donate to directly drive research and positively impact the families affected. See how you can help below! FUNDRAISE Discover creative ways to show your support for BPAN! Click above for ideas or inspire us with your own - together, we can make a difference. SPREAD AWARENESS Help us spread awareness for BPAN by viewing and sharing our socials or find our contact form here to get in touch with us directly. DONATE Your support can change lives! Help us fund research and support for BPAN. Click above to make a meaningful impact today! Here's how we can support you: We offer free support for families affected by BPAN. Visit our dedicated page for Helpful Information , where you can find valuable resources to help you navigate the journey. You can also Request a Callback to connect with another parent who understands BPAN—share experiences, ask questions, and receive support from someone who truly gets it. Gain a deeper understanding of BPAN and its symptoms, and how they impact those affected on our About BPAN page. You can also follow us on social media to keep up to date with exciting news, research updates and our annual BPAN family days. HELPFUL INFORMATION Visit our dedicated page for valuable resources and information about BPAN to help you navigate the journey. REQUEST A CALL Share experiences, ask questions, and find support from someone who truly gets it. ABOUT BPAN Gain a deeper understanding of BPAN and its symptoms, and how they impact those affected.

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

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 Research 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.

Review Action for BPAN’s cookie policy to understand how we use cookies on our website and how we protect your privacy while providing a better user experience. Cookie Policy Terms and Conditions Last updated: 31/01/2024 How We Use Cookies We use cookies on our website for the following purposes: Essential Cookies: These cookies are necessary for the website to function properly. They enable basic features like security, page navigation, and access to secure areas of the website. Without these cookies, the website would not function as intended. Performance Cookies: These cookies help us understand how visitors interact with our website by collecting information about the pages they visit and any errors they encounter. This helps us improve the performance of our website. Functional Cookies: These cookies allow us to remember choices you make, such as your language preferences or donation preferences, and provide enhanced, more personalized features. They may also be used to remember if you have already provided consent to our Cookie Policy. Targeting or Advertising Cookies: These cookies track your browsing habits across other websites to deliver more relevant advertisements to you. We may also use third-party cookies for tracking and reporting purposes (such as through Google Analytics). 3. What Cookies Do We Use? Here are some of the cookies used on our website: Google Analytics Cookies: These cookies are used to collect information about how visitors use our website. This information is used to create reports and help us improve the site. The data collected includes the number of visitors, where visitors have come to the site from, and the pages they visited. Example: _ga, _gid, _gat Session Cookies: These cookies are temporary and are erased once you close your browser. They are used to store temporary information, such as login status, preferences, or items in a shopping cart. Persistent Cookies: These cookies remain on your device for a specified period or until you delete them. They are used for remembering your preferences across sessions, like language settings or login credentials (where applicable). 4. Managing Cookies You can manage and control your cookie settings in several ways: Browser Settings: Most browsers allow you to refuse or accept cookies. You can change the settings on your browser to block cookies or delete cookies that have been placed on your device. Please note that if you choose to block cookies, certain features of the website may not work correctly. For instructions on how to control cookies in different browsers, visit the following pages: Google Chrome Mozilla Firefox Safari Microsoft Edge Cookie Consent Tool: When you first visit our website, you will be asked to consent to the use of cookies through a pop-up banner. You can manage your preferences by clicking on the "Cookie Settings" link in the banner, which allows you to enable or disable non-essential cookies. 5. Third-Party Cookies We may also use third-party services that set cookies on our website. These third parties may include advertising networks, social media platforms, or analytics providers. Action for BPAN does not control these third-party cookies and advises you to review their respective cookie policies for more information. Examples of third-party cookies we use include: Google Analytics: Used to analyze traffic and website usage. Facebook and Twitter: Used for social media sharing buttons and tracking social media interaction. YouTube: Used when embedding videos from YouTube on our site. 6. Changes to This Cookie Policy We may update this Cookie Policy from time to time to reflect changes in how we use cookies or to comply with legal requirements. When we update this policy, we will post the new version on this page and update the “Last Updated” date at the top of the policy. We encourage you to review this policy regularly to stay informed about how we use cookies. 7. Contact Us If you have any questions or concerns about this Cookie Policy or how we use cookies, please contact us at: 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

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

Read Isabella's story, the journey of a co-founder’s daughter at Action for BPAN, as she faces the challenges of living with BPAN. A heartfelt introduction to Isabella and the honest impact BPAN has on her and her family. Isabella's Story Isabella's journey with BPAN has been a challenging one, but she has persevered through it all with a smile. Her story is one of strength, resilience, and hope. Nicole Isabella's Mum x Isabella's Story Isabella was born naturally, full-term on the 4th of February 2018 after an uneventful pregnancy. When we met the beautiful, innocent little girl we had been blessed with, we made the promise to her that all parents make: to love and protect her and do everything in our power to ensure she has the most amazing life. As a baby, we had no clue of what was to come. Isabella was beautiful, happy, alert, and would coo, blow raspberries, and play like the other babies. As she grew, she continued to make good progress but was starting to fall a little behind with her milestones. Me being me, I did not want to hear anything negative about her and did not want to compare her to other children, but over time, it became harder to ignore. At 1 year old, Isabella was starting to walk but still had no words. At 15 months, Isabella had her first major seizure, and it was terrifying. The seizure lasted just over two hours. She was so tiny in that hospital bed with tens of doctors swarming over her, trying to save her life. Sadly, this was the first of many times I felt like we might lose her, but thankfully, eventually, it stopped, and she started to breathe for herself again. This was the beginning of what felt like an eternity of tests, and I felt so terrible that she was having to go through so much without understanding why this was happening to her. This included MRIs, a lumbar puncture, EEGs, and countless blood draws. It was a rollercoaster, and we had so many unanswered questions about what was happening to Isabella. We were ultimately sent to see a geneticist for genome testing. She took measurements of all her beautiful little features to check for any "abnormalities" and then took some blood samples. Months later, on the 19th of January 2021, we finally got the results back. By this time, lockdown was back in effect, so we were told over the phone the words no parents ever imagine they would hear about their child at any age, let alone at two years old: "I'm sorry, I'm afraid it's not good news." BPAN—full name beta-propeller protein-associated neurodegeneration. Our hearts broke. Everything we had hoped for Isabella and her future was being taken away from her. As the doctor explained BPAN and the reality of Isabella's future, I just felt sick and devastated. She was telling me how hard our little girl's life would become and how it was going to end when it had barely started. Isabella had been making amazing progress—she could run, dance, she had started using sign language. She was happy, cheeky, and deserved a future of endless opportunities. All I could think about was the life and opportunities that she would not have as her health deteriorated with what seemed to me like every scary condition we fear getting later in life, but Isabella was going to be stripped away by these terrible things as a child. We were told that as she grows, iron would build up in her brain, and BPAN would cause her to lose everything she had worked so incredibly hard to gain. She would develop Alzheimer's and Parkinson's. She would lose the ability to walk, eat, communicate, and her vision. She would also develop dystonia, which can cause muscles to spasm so badly that bones can break, along with many other things that I didn't even know existed at the time. There is currently no treatment or cure for BPAN, and they said that it would just be palliative care when needed. Isabella had an MRI the day after her 6th birthday, and we could already see iron deposits on the part of her brain that controls movement. Regression can happen at any time, but it usually starts around adolescence. While her peers gain their independence and head out into the world, Isabella will be losing hers. Isabella is 6 now and goes to a school that she loves and receives fantastic support from them. Both John and I can see her flourishing and how much fun she has there. She absolutely loves animals, music, and food—especially chocolate! She runs, climbs, loves going through my makeup, cuddles and kisses, YouTube, and all the other things a typical little girl of 6 enjoys. It’s very hard to enjoy all of these wonderful moments with her while knowing what the future holds unless we do something. I have watched Isabella go through the most horrific and terrifying medical emergencies, and I'm grateful that she is such a fighter. When we received Isabella's diagnosis, the clock started ticking down for her, so we started looking for research into treatments or cures for BPAN. Scientists had started work, and research was underway, but due to the fact that BPAN is a rare disease, unfortunately, it does not get the attention or funding that a disease as devastating as this deserves and fundamentally needs to progress. I was shocked to find there was no UK-based charity fundraising to support the research we were so desperate for. Every time Isabella has a major seizure, we rush to the hospital—sometimes by car, sometimes by ambulance, and once, in a truly terrifying moment, by helicopter to London. Each time, I find myself repeatedly explaining this devastating condition to doctors and paramedics while still trying to fully understand it myself. There was no information from the NHS website available on how the condition progressed, and with Covid in full effect, no one to answer my questions. So, I turned to other families on a worldwide Facebook group. This led me to Kelly and her lovely daughter Emily. We have the same goal and reason for creating the first UK-based charity for BPAN. With everything we have learned, we wanted to be able to help give hope to everyone with BPAN—not just in the UK, but worldwide. The UK is one of the most advanced countries in the world in science and medicine. We want to be able to contribute and support the vital work for a cure or treatment that's being done at Great Ormond Street and across the globe. I have updated Isabella's story from the first version that I wrote when she was two years old. Here, I wrote that I had written this in tears, and while that is true—I cried every moment I was alone when she was first diagnosed—now, I feel stronger and more determined because I understand that there is hope for her. I will do everything I can for Bells and any child unlucky enough to be diagnosed with this terrible condition to have a life without pain. I don't want her to forget who she is or who I am. That is our promise to Isabella: we will fight for her and do everything we can to give her the best chance at life. I can’t help but dream of a day years from now when I can sit and tell her that as a child, she was very sick, but through her strength and the kindness and generosity of friends, family, and people we may never meet, we were able to overcome BPAN together. Please help us raise the funds and awareness needed to bring a cure in time for Isabella and so many others with BPAN. If you can help in some way such as a donation or a sponsored fundraiser it will help give these underrepresented children a chance at a future full of love, endless possibilities, and smiles. Thank you for taking the time to read about our lovely little Isabella. Any donation you could offer would mean more to us than you could ever imagine and bring us closer to a cure! The road map for a cure is there and we just need to push it to the finish line. Nicole, John and Isabella. xxx Donate

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.

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

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

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

Get in touch with Action for BPAN through our contact page or connect with us on social media. Stay updated, ask questions, or find out how you can support our mission. Contact Us & Socials 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 SPREAD AWARENESS You can help us spread awareness for BPAN by liking, following, and sharing our social media pages. You could also help us by sharing your BPAN journeys with us. We'd love to hear them! We feel that by sharing stories and personal experiences it enables us to pass on the information to others who may be looking for answers. Had an amazing fundraiser? Please take lots of pictures so we can share and celebrate all of your accomplishments. SOCIALS @ActionforBPANuk Facebook Please like and follow us on Facebook. K eep up to date with Action for BPAN news, updates and a nnouncements! Read our posts! @action.for.bpan TikTok Please like and follow us on Facebook. K eep up to date with Action for BPAN news, updates and a nnouncements! Watch our shorts! @ACTION_FOR_BPAN Instagram Please like and follow us on instgram. Keep up to date with Action for BPAN news, updates and announcements! View our pictures! @ YouTube Action for BPAN coming to YouTube soon! Watch our videos!

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.

Access downloadable fundraising materials to help you get started with your fundraising efforts for Action for BPAN. Find tools and resources to support your mission to raise awareness and funds for BPAN research. Fundraising Materials If you need any assistance, advice, or help creating materials for your fundraiser, especially if you have something specific in mind, then please don't hesitate to reach out. We’re here to support you and will do our best to assist in any way we can. If you would like to fundraise for Action for BPAN, please remember to register your fundraising efforts using the contact form at the bottom of this page. Action for BPAN Sponsorship form Action for BPAN Totaliser Action for BPAN Bunting (Pink) Action for BPAN Bunting (Blue) Please let us know if you would like us to add to your own fundraisers QR code to the totalizer. More fundraising materials will be available soon... 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 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. Developing gene therapy for a rare neurodegenerative condition called Beta-propeller Protein-associated Neurodegeneration. Project Leader: Prof. Manju Kurian Start Date: 1st June 2024 End Date: 31st May 2027 INTRODUCTION Professor Manju Kurian of UCL Great Ormond Street Institute of Child Health is developing a gene therapy for children with BPAN. Her hope is that this will ultimately lead to a safe and effective new treatment that can help slow disease progression - transforming the lives of children born with this debilitating condition. WHY BPAN is a rare genetic condition that progressively damages the nervous system, leading to a range of distressing symptoms that gradually worsen over time. A child born with BPAN typically experiences early-life seizures (epilepsy), learning difficulties and delayed development, speech problems and movement issues affecting walking and everyday activities. In late adolescence or early adulthood, intellectual decline begins, leading to dementia, along with worsening movement problems such as involuntary contractions and tremors. There is no cure, and children's lives will often be cut short. New treatments are desperately needed that can slow down or stop the disease's progression. HOW BPAN is caused by a faulty gene, called WDR45, which usually produces a protein that plays an important role in removing waste material from cells. Without this protein, toxic substances build up in nerve cells, leading to damage and cell death. Researchers aim to develop a new treatment using a harmless virus to deliver a healthy copy of the WDR45 gene directly into the brain. To test this gene therapy's safety and effectiveness, they will create two lab models: Firstly, they will generate 'mini-brains grown from reprogrammed patient skin cells. Secondly, they will use a mouse model with similar features to the human disease. Successful results could lead to future clinical trials in children with BPAN. IMPACT If successful, this could lead to a new treatment for BPAN that can halt disease progression, increase life expectancy and provide a better quality of life for children and their families affected by this devastating condition. We will post updates on the project across our socials as soon as possible.

Explore helpful information from other BPAN families, including tips and ideas on how to access support and navigate the challenges of raising a child with BPAN. HELPFUL INFORMATION Here are some helpful tips, information and products ideas we have gathered from BPAN families. We hope you find something useful and if you have a tip you would like to share to with other families please let us know! Medical Care & Respite I’m having concerns or disagreements with my child’s medical care. What can I do? It is important that you feel heard and that your thoughts are taken into consideration as BPAN is so rare you will become an expert, not only about your child but the condition in general. There are many people out there to support you if have concerns. Patient Advice and Liaison Service: If you have a concern or complaint your hospital, the PALS department will be able to assist you. BPAN specialists: If you need information specific to BPAN or a letter of support, speak to your BPAN specialist that understands the condition. Care coordinator: Available through your local authority care coordinators can help you navigate the healthcare system to ensure you receive the right support and care at the right time. They work closely with patients, GPs and other health care professionals to identify needs, develop care plans, and connect patients with services that advocate for patients. Personal experience – We value our Health Care Coordinator so much, she is an important asset that has helped with so many issues from chasing things up to letters of support, she has always been a big help! How can I make sure myself and carers are trained to provide day to day and emergency care? Feeling prepared when everything seems so unknown can be a big help so if you want to feel more prepared you can speak to your BPAN Specialists, local GP’s, Epilepsy Nurses or Community Nurses to see what training is available to you locally. Personal experience - As a family we have attended CPR Training at the hospital. We have also received training with the Epilepsy Nurses for administering emergency meds (oral and rectal) and the Community Nurses for training to use the suction machine and administering oxygen. What are specialist Dentists and should I bother? Specialist Dentists are for children and people with additional needs. They allow for longer appointments so they can take their time and can advise you on lots of helpful techniques if you’re having any issues such as tasteless non-foaming toothpaste, for those not a fan of regular toothpaste, or the best time to brush if you’re Bpanner can sometimes only manage once a day! Is there a best practice guide for BPAN? Yes, this guide was created in 2021 by Drs specialising in BPAN from around the world you should give a copy to your child's Drs. BPAN Management Guide How can I get help with respite? Making time for self-care is important. Respite can also provide your loved one with access to new experiences and help grow their own social life and relationships. Speak to your local authority to see what help is available to you. Direct Payments Personal Assistant (PA) - Many people choose to have a PA that is funded by your the local authority. There are many respite centres in the UK ; either local GOV or charity's that offer day-care, overnight care and short breaks. These facilities often have tons of fun activities such as fun days, holiday theme parties and special events that are accessible with fun for all abilities. Personal experience - One of our local respite centres is a charity called Demelza. When we were first offered a referral by the Epilepsy Nurses I was told it was a hospice so rejected the referral. However, a year later someone else told me about all of the lovely things they offer and it wasn’t just a hospice. It was more for respite, extra therapy and family time so I took the referral and I’m so glad that I did! We now enjoy hydro therapy, music therapy, home respite and all of the fun days they organise together as a family and I know they offer overnight respite should I need them. Home & Equipment Can I get help funding equipment not available on the NHS? Yes, there are numerous charities in the UK that can help partially or fully fund specialist equipment not provided by the NHS. This includes items like wheelchair add-ons such as power assists, Epilepsy alarms , specialist play equipment like bikes and trikes, specialist car seats , and travel beds . Personal experience - We received charity funding for a Carrot car seat, which provides excellent support the Carrot allows for a 5-point harness, spins for easy access, reclines, and even has a Velcro table for play during car rides! The application process was straightforward; we filled out the form and obtained a support letter from a physio, and within about six weeks, we had the seat. Can I get specialist home equipment from the NHS? Yes, your local Health Occupational therapist (OT) and Physio will be able to asses you for specialist home equipment such as: - Supported seating - Walkers Social care Occupational therapist provide different types of equipment such as comfy seating for Home Wedges that you can use to support your child sitting or sleeping. - Specialist sleep safe bed - Hoists - Bath chairs Can I get help with adapting my house to make it more suitable? Yes, your local authority will be able to help you with this. Social Services Disable services will be able to assess your family’s needs and apply for a Disabled Facilities Grant (DFG) to ensure you have suitable living conditions. Personal experience - This has been great for us and our house is now ready for whatever the future may hold! Its worth speaking to them even if your still managing, these thing take time so check your local authorities waiting times and try not to leave it until things become to difficult! Can I get help with incontinence products? Yes, you can apply for this service by completing a self referral to your local incontinence team. Local Services & Opportunities REMAP "Making things possible for the disabled" They do this by making and adapting equipment to meet the unique needs of individuals at no cost to them. The equipment, produced by a team of dedicated volunteers, can help with day-to-day tasks such as mobility, personal care or eating. Or it can enable the client to pursue a hobby or ambition, such as participating in a sport or art activity. Information Advice and Support Services (IASS) Your local Authority will have their own IASS That is there to help young people age 0-25 with lots of things such as EHCP's, Additional support at school, Help filling out forms or preparing for meetings and offering advice about the different services in your area. Local Offer Every local Authority should have a local or equivalent where you can find a directory of inclusive support groups, events, and activity's. Emergency Carer Card A card which has a registration number and a telephone number that can be called in an emergency situation. The carer carries the card at all times so that it can be used as an instant source of identification in case of accident or sudden illness. Riding for the Disabled There are many disabled riding centres around the UK if your looking for a fun hobby that's also great exercise! many centres do have waiting lists so its worth getting your name on the list. Free Swimming Your local authority run Leisure Centre may offer a disabled swim card (this allows for a free carer also) speak to your local leisure centre for how to apply. Carers Concessions Most attractions will offer a free carer admission with a disabled ticket. Depending on their rules you may need to show proof of DLA, carers allowance letter or Blue Badge (It's best to have a picture of these on your phone so you don't have to carry them around) The information provided here is based on lived experience of the individuals involved. It is important to note that experiences may vary depending on location and local authority. Useful Home Accessories & Products Dribble Bibs to Snoods! It was a struggle to find nice big girl/adult bibs, the sizes were either massive or tiny and the patterns were sometimes a bit too wild to match with outfits! I was so happy when we found snoods they look like more of a style accessory than a dribble bib. They dry quickly and you can turn them around so you don't have to change them every 5 minutes! Wellie Boots Welly boots made of foam! (Like a croc) they usually have EVA as the material in the description. These are super lightweight and they come with a sock in them so they're not slipping off or making her fall over. You can find them on Amazon. Soft Washable Bed Pads These are great for if there are any accidents or leaks in the night! they are a soft material so no plastic crinkle noises and you can just throw them in the wash and reuse them. You can get them vat-free on incontinence sites and they are much more cost effective than the throwaways! Swim Floaties We brought a lie-on floaty ring that clips up behind the back as our daughter was getting too big to put her legs through the holes of a baby one and she loved it! It was great because it was much easier to put her in and she would be in the correct swimming position so we could get her working her legs from behind for exercise. A company called LAYCOL sells them on Amazon but there are similar ones if you want to shop around. We have used it for three years and it's never needed replacing. Swim Nappy's I wish I hadn't wasted my money for so long! The reusable swim shorts from Splash About are great and go all the way to adult sizes. I only found them when I really couldn’t find any swim nappies big enough to fit anymore, but I wish I had known about them earlier! She now wears her swim shorts/nappy with a zip-up swimming top, as she hates getting in and out of a costume anyway! The Honey Bear Straw Training Bottle These bottles come with a stopper at the end of the straw and because they are squeezable so you can squeeze the juice up the straw until they learn to drink through it for themselves. Personal Experience - Our daughter's therapist recommended we try this and it was the most success we've ever had with a straw! If you want to give them a try you can find them on Amazon. Toys and Gifts Every Christmas and birthday, family & friends want to know what to get for our child and at times, we're not even sure what we're going to buy! So, we thought it would be nice to share some of our best finds for our little ones. We hope that you will also share your most loved gifts so we can share them with others! I know I would love some more gift ideas :) Peanut Ball - What a great gift this was, they are practically indestructible, great for exercise, and tonnes of fun! They are not very expensive and you can order them on Amazon. Ceiling Swing Chair - These are amazing! so much fun when you want to play but also for calming down and relaxing, you do need to have a load-bearing beam to attach them to but they're surprisingly not very expensive, Amazon sells them for about £40 and they would be a lovely main present. Malissa and Dough / Jaques London - They are great for the kind of open-ended play that helps build skills. Their products are mostly wood so very durable but also versatile for making up your own games so there's no right or wrong they can just do what they feel with them, I'm sure if you haven't heard of them yet you will find something they will enjoy playing with! Tomy Hide And Seek Squeek Eggs - They have a couple of different varieties like eggs in a box or Eggs on a bus! The opening and taking everything apart has always been very interesting! Ball (Smaller than a standard football not a tiny bouncy ball) - Our daughter loves playing with a ball! she can now catch a ball when we say 1, 2, 3 Catch! and can throw it back to us. She loves it and we are so proud of her progress! Galts Frog In a Box And Vtech pop-up honey bear - They are quite similar we first had with the frog in the box because it's easier to open then we've got the honey bear (This one has buttons to make the bear pop up) and these types of toys have been a firm favourite for years! Small Basketball Hoop - We have stuck it up with Velcro dot stickers I got from Amazon, We have one in our front room and one in the garden. It's a great game to play together we take the ball further and further away so she has to go further to put it in the hoop then we do a big celebration when she scores!

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