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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

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!

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

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

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

Sign up to Step Up For BPAN - Join Action for BPAN in our annual climb up Mount Snowdon to help fund crucial research Step Up For BPAN Thank you for your interest in joining us for our Mount Snowdon fundraiser! Your support means the world to us and will make a real difference in advancing research and support for BPAN. Navigating BPAN can be isolating so we hope the event will also be a chance to bring our community together and form new friendships! Here’s everything you need to know to get ready... What you need to know! How Your Efforts Can Help Your fundraising will play a crucial role in helping Action for BPAN fund a cure or treatment for BPAN. Your efforts will truly help us to raising awareness and funds for this devastating and underfunded disorder that takes so much from so many families. With Action for BPAN's funding and support to dedicated individuals and organisations, we want to ensure the vital research crosses the finish line and improves the lives of those affected BPAN. Contact Us Are you ready to make a difference and raise funds for Action For BPAN? We're thrilled to help you on your fundraising journey! Our team is passionate about supporting you so please get in touch to register your fundraising and let's make your fundraising idea a reality! Select the option 'Fundraising' to talk to us about your idea or query! First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

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

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

Review Action for BPAN's privacy policy to understand how we protect your personal information and privacy while supporting our mission. Privacy Policy Privacy Policy Last Updated: 31/12/2024 Action for BPAN ("we", "our", "us") is committed to protecting and respecting your privacy. This Privacy Policy explains how we collect, use, store, and protect your personal data when you visit our website www.actionforbpan.org.uk ("our site"), donate to us, sign up for communications, or engage with us in any other way. By using our site and engaging with our services, you agree to the collection and use of information in accordance with this Privacy Policy. 1. Who We Are Action for BPAN is a registered charity in the UK (Charity Number: 1210529). We are dedicated to providing support and information about BPAN to those who need it, raising awareness and supporting research into BPAN (Beta-propeller protein-associated neurodegeneration). 2. Information We Collect We collect several types of personal data to provide and improve our services: Personal Identification Information: Name, email address, postal address, phone number, and payment details when you make a donation or register for an event. Payment Information: Credit/debit card details and other payment information for processing donations (please note that payment data is processed by third-party payment processors such as PayPal or JustGiving). Donation Data: Details of donations you make, including the amount, method, and frequency of your donations. Communication Data: Information you provide when signing up for newsletters, events, volunteer opportunities, or responding to surveys. Technical Data: Information about how you use our website, such as IP address, browser type, operating system, and page interactions, collected via cookies. 3. How We Use Your Data We use your data for the following purposes: To process donations: To process your donations, provide receipts, and claim Gift Aid (if applicable). To send communications: To keep you informed about campaigns, research, events, fundraising opportunities, and other initiatives related to our charity. For legal and compliance purposes: To comply with legal obligations, including reporting for Gift Aid claims and other regulatory requirements. To improve our website and services: To analyze website usage, improve user experience, and respond to your inquiries or feedback. For administrative purposes: To manage your records, such as keeping track of donations or event registrations. 4. Legal Basis for Processing Your Data We process your personal data under the following legal bases: Consent: When you opt-in to receive communications (e.g., newsletters, event updates), participate in campaigns, or provide donations. Contractual necessity: To process donations, fulfill event registrations, and other services you request. Legal obligations: To comply with applicable laws, such as reporting Gift Aid and tax compliance. Legitimate interests: To manage the relationship between us, including contacting you regarding fundraising activities, events, and services that may be of interest to you. 5. How We Share Your Data We will never sell or rent your personal data to third parties. However, we may share your data in the following circumstances: With service providers: To process payments, provide communications, or manage website functionality. These service providers will only use your data as necessary to perform their functions and are obligated to keep your information secure. For Gift Aid claims: We may share your details with HMRC to claim Gift Aid on eligible donations. For legal reasons: We may share your data if required to do so by law or in response to legal requests by public authorities, including law enforcement agencies. 6. How We Protect Your Data We take your privacy seriously and implement appropriate technical and organizational measures to protect your personal data. These measures include: Secure servers for storing personal data. Encryption of sensitive data, such as payment details, during transmission. Regular security assessments and audits of our systems. While we take reasonable steps to protect your personal data, please note that no method of transmission over the Internet is 100% secure. We cannot guarantee the security of data transmitted to our site, and you do so at your own risk. 7. Your Rights Regarding Your Data You have several rights regarding the personal data we hold about you: Right of access: You have the right to request a copy of the personal data we hold about you. Right to rectification: You have the right to correct any inaccurate or incomplete information we hold about you. Right to erasure: You can request that we delete your personal data, subject to certain exceptions (e.g., if we need to retain it for legal reasons). Right to restriction of processing: You can request that we limit how we process your data in certain circumstances. Right to data portability: You can request that we transfer your personal data to another organization in a structured, commonly used, and machine-readable format. Right to object: You can object to our processing of your personal data in certain situations. Right to withdraw consent: If we are processing your data based on your consent, you can withdraw that consent at any time. If you wish to exercise any of these rights, please contact us at actionforbpan@gmail.com . 8. Cookies Our website uses cookies to enhance your browsing experience. Cookies are small files placed on your device that help us improve site functionality, remember preferences, and analyze site traffic. You can control the use of cookies by adjusting your browser settings. However, blocking certain cookies may affect the functionality of the website. For more detailed information on how we use cookies, please see our Cookie Policy. 9. Third-Party Websites Our website may contain links to third-party websites. These links are provided for your convenience, but we are not responsible for the content, privacy policies, or practices of these third-party sites. We encourage you to review their privacy policies before sharing your personal data with them. 10. Changes to This Privacy Policy We may update this Privacy Policy from time to time. Any changes will be posted on this page, and we will update the "Last Updated" date at the top of the policy. We encourage you to review this policy periodically to stay informed about how we are protecting your data. 11. Contact Us If you have any questions or concerns about this Privacy Policy, or if you wish to exercise any of your rights under data protection law, 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'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

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!

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 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. 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.

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

Fundraise with Action for BPAN and make a difference! Explore various fundraising options, from community events to sponsored challenges, Get involved to help fund vital research and support families affected by BPAN. Fundraising We’re excited that you’re interested in supporting Action for BPAN! Every effort from our supporters is invaluable, and by joining us, you become a vital part of our mission to find a cure or treatment. There are countless ways to get involved, so let’s work together to make a difference and spread positivity. If you’re fundraising for Action for BPAN, we’d love to hear from you! Contact us for tools, tips, and resources to make your fundraising journey smooth and successful. Fundraising should be an enjoyable and rewarding experience, not a source of stress so we’re here to share our knowledge and ideas to help you maximize donations while keeping the process fun and meaningful! You can also view and download helpful fundraising materials by clicking the button below. Ways To Pay In Your Fundraising Fundraising Materials Sponsored Challenge Use your hobby or challenge yourself to try something new! Read More Fundraise at School Get your school involved with some amazing, creative fundraising ideas! Read More Fundraise in Your Community Bring your local community closer together for some fun fundraising ideas with the neighbours! Read More Fundraise at Work Have some fun at work while fundraising! Wear your company logo with pride! Read More Skills or Services Perhaps you have a skill or service you would like to offer us to help us with our fundraising mission! Read More Your Business Find out how we can partner with you and get your business involved! Read More Make a Donation In Memory Leave an everlasting memory by donating on behalf of your loved one. Read More Leave a Gift in Your Will Find out how you can leave a gift in your will. Read More Don't forget to take lots of photos so we can share and celebrate your efforts! When you have completed a fundraiser and would like to submit your donations, please let us know so we can send you conformation once we have received it. actionforbpan@gmail.com If you decide to fundraise for Action for BPAN, please read our fundraising guidance and disclaimer by clicking below. Fundraising Disclaimer

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.

Explore our 'About BPAN' page to learn more about Beta-Propeller Protein-Associated Neurodegeneration (BPAN). find out more about BPAN’s symptoms and progression to help you better understand the challenges your loved ones may face. WHAT IS BPAN Beta-propeller protein-associated neurodegeneration (BPAN) is a devastating rare genetic disorder caused by mutations in the WDR45 gene, which leads to abnormal accumulation of iron in the brain. The disease progression typically includes developmental delays, seizures, and movement disorders. There is currently no cure for BPAN. It causes progressive problems with movement, speech, and delays, and can lead to symptoms similar to Alzheimer's and Parkinson's diseases. BPAN usually starts in early childhood with developmental delays and seizures, and as it progresses, it can affect a person's ability to walk, communicate, and take care of themselves. Before you read on... We understand that BPAN can be difficult to navigate alone. We are here to provide information and support in any way we can. If you or a loved one have any questions or concerns, please don't hesitate to contact us. Contact Us This is the BPAN management guidelines that has been created by some of the words leading Drs specialise in BPAN. Be sure to download and share this with your care team BPAN Management Guidelines Symptoms Symptoms of BPAN typically start to appear in early childhood. Common symptoms include: Developmental delay (Usually the first change that is noticed) Expressive language is significantly affected and kids usually develop few to no words Could also be an overall developmental delay Cognitive (mental) decline Can progress to dementia in adulthood Parkinsonism (symptoms similar to Parkinson’s disease) Typically does not start until young adulthood Tremors (shaking) Bradykinesia (slow movements) Rigidity (stiffness) Postural instability (loss of balance that causes unsteadiness) Other muscle problems Dystonia (involuntary muscle contraction and spasms) Gait freezing (freezing while walking) Spasticity (stiff, rigid muscles) Seizures Some children may have multiple seizure types Other Symptoms Characteristic behaviours and stereotypes (repetitive, rhythmic motions) Individuals with BPAN can have some symptoms that are typically associated with Rett syndrome Cognitive decline with specific loss of expressive language skills Hand-wringing Seizures Abnormal sleep patterns However, unlike individuals with Rett syndrome, those with BPAN do not appear to have small head size Cause/Genetics The human body is made up of millions of cells. Inside every cell there is a structure called DNA, which is like an instruction book. DNA contains detailed steps about how all the parts of the body are put together and how they work. However, DNA contains too much information to fit into a single “book” so it is packaged into multiple volumes called chromosomes. Humans typically have 46 total chromosomes that are organized in 23 pairs. There are two copies of each chromosome because we receive one set of 23 chromosomes from our biological mother and the other set of 23 from our biological father. Chromosomes 1-22 are called autosomes and the last pair is called the sex chromosomes because they determine a person’s gender. Females have two X chromosomes and males have one X and one Y. If DNA is the body’s instruction book and it is stored in multiple volumes (called chromosomes), then genes would be the individual chapters of those books. Genes are small pieces of DNA that regulate certain parts or functions of the body. Sometimes multiple genes (or chapters) are needed to control one function. Other times, just one gene (or chapter) can influence multiple functions. Since there are two copies of each chromosome, there are also two copies of each gene. In some gene pairs, both copies need to be expressed (or turned on) in order for them to do their job correctly. For other genes pairs, only one copy needs to be expressed. When a single cell in the human body divides and replicates, its DNA is also replicated. This replication process is usually very accurate but sometimes the body can make a mistake and create a “typo” (or mutation). Just like a typo in a book, a mutation in the DNA can be unnoticeable, harmless, or serious. A mutation with serious consequences can result in a part of the body not developing correctly or a particular function not working properly. In the case of NBIA disorders, changes in certain genes cause a person to develop their particular type of NBIA. Changes in these NBIA genes lead to the groups of symptoms we observe, although we do not yet understand how the changed genes cause many of these findings. WDR45 is the only gene known to cause BPAN. WDR45’s main job is to tell the body’s cells how to make a protein called WIPI-4, which is involved in the process of autophagy (cells breaking down their own components in order to recycle the parts). It is not yet clear to us how a decrease in this protein eventually leads to iron accumulation in the brain. Inheritance Although BPAN is a genetic condition and the WDR45 gene appears to work in an X-linked dominant pattern, it is usually not inherited from a parent. To understand inheritance and the variability seen in individuals with BPAN, it helps to first understand X-inactivation and mosaicism. X-inactivation The WDR45 gene is located on the X chromosome. Females have two X chromosomes, and therefore two copies of the WDR45 gene. Males, in contrast, have one X and one Y chromosome, and only one copy of the WDR45 gene. Since females have an “extra” X chromosome compared to males, their cells only use one copy and the other is “turned off.” This is called X-inactivation. Males have only one X, so they do not need X-inactivation, and they use their single X chromosome in each cell. This means that a female with BPAN would have some cells in which the WDR45 gene with the mutation is “turned off” and other cells in which the working copy of the gene is “turned off.” This process happens at random and varies from cell to cell. Some females with BPAN may have milder symptoms because they have more cells where the WDR45 mutation has been “turned off” (inactivated). In contrast, males only have one X chromosome. If their single copy of the WDR45 gene has a mutation, then it will always be activated and they will display BPAN symptoms. This is why most males with BPAN likely miscarry during early pregnancy or have more severe symptoms than the females. Mosaicism In some rare cases, males and females with BPAN have a relatively high level of function, or mild disease. These individuals may have two types of cells in their bodies: some with a WDR45 mutation and some without. This happens when a normal sperm and egg come together at conception but then as the cells begin to divide, a mutation occurs in the WDR45 gene. Having two cell populations like this is called “mosaicism.” The ratio of cells with or without the mutation depends on at which stage of development and cell division the mutation occurred. Parents of children with BPAN can also have mosaicism without having BPAN symptoms themselves. Some parents can have mosaicism throughout their bodies, which can be shown by testing blood or skin cells. Others have a very specific type called gonadal mosaicism, where we believe only some of the sperm or egg cells have a genetic change, but we cannot find it elsewhere in the body. We become suspicious for mosaicism or gonadal mosaicism when a healthy couple has more than one child with BPAN, which has been reported multiple times in the literature. Now that we have reviewed the sex chromosomes, X-inactivation, and the concept of mosaicism, it is easier to understand how a child may be born with BPAN: Most commonly, it is a new change ONLY in the child with BPAN. The WDR45 gene may have been changed in the sperm or the egg, or it may have happened during or shortly after conception. Typically, they are the only person in the family with BPAN. It is important to test both parents to be as sure as possible that the gene mutation is new. Rarely, a couple has more than one child with BPAN. When this occurs, we must assume that the change in WDR45 was inherited from either the mother or father. Either parent could have gonadal mosaicism or mosaicism in additional tissues. It is even possible that the mother could have a WDR45 mutation in ALL her cells, but X-inactivation has turned that copy of the gene off, and it has not affected her health. Sometimes we can prove by testing parental blood samples that one parent has mosaicism or a copy of the WDR45 gene, which helps us understand the chance to have another child with BPAN. Future Pregnancies Finally, because the genetics of BPAN is complicated, there are recommendations to consider after having an affected child: Both parents of a child with BPAN should always be tested. In the vast majority of cases, this testing will be negative. Although the testing cannot detect all cases of mosaicism, a negative result is reassuring. If a mutation is found in one of the parents, it will give them important information about themselves and possibly other family members, including their other children. If a couple has a child with BPAN and additional healthy daughters, their healthy daughters should be counselled as adults and possibly even tested for the WDR45 gene change before they have children of their own. This is a cautious approach that addresses the possibility of a healthy sister inheriting a WDR45 mutation that she does not show due to X-inactivation, but that could be passed on to her children. Genetic counselling can help assess the risks in various families and explain complicated concepts like X-inactivation and mosaicism. Prenatal testing is also available during future pregnancies for those who want additional reassurance. Diagnosis & Testing A brain MRI is a standard diagnostic tool for all NBIA disorders. MRI stands for magnetic resonance imaging. An MRI produces a picture of the body that is created using a magnetic field and a computer. The technology used in an MRI is different from that of an x-ray. An MRI is painless and is even considered safe to do during pregnancy. Sometimes an MRI is done of the whole body, but more often, a doctor will order an MRI of one particular part of the body. Typically, the first indication of a BPAN diagnosis is evidence of brain iron accumulation on a brain MRI. Both T1 and T2 MRIs are necessary for the diagnosis of BPAN. MRI findings for BPAN include: Hypointensity (darkness) in the substantia nigra and globus pallidus on T2 MRI The dark patches in the substantia nigra and globus pallidus indicate iron accumulation Iron accumulates earlier and to a higher degree in the substantia nigra Hyperintensity (brightness) in the substantia nigra and cerebral peduncles on T1 MRI The substantia nigra and cerebral peduncles have a thin, dark central band surrounded by a “halo” of brightness Other changes Generalized cerebral atrophy (decrease in brain size) Mild cerebellar atrophy (decrease in cerebellum size) Thinned cerebral peduncle (structure that connects the hindbrain to the forebrain) An MRI done early in the progression of BPAN may appear to be normal or show only nonspecific cerebral atrophy. Iron may not appear until early adulthood. Diagnosis of BPAN is confirmed through genetic testing of the WDR45 gene to find a gene change. Genetic testing begins with sequence analysis , and if no gene changes are found, then it continues on to deletion/duplication analysis . Rarely, an individual with the signs and symptoms of BPAN may not have any WDR45 gene change identified. This can happen because the genetic testing is not perfect and has certain limitations. It does not mean the person does not have BPAN; it may just mean we do not yet have the technology to find the hidden gene change. In these cases it becomes very important to have doctors experienced with BPAN review the MRI and the person’s symptoms very carefully to be as sure as possible of the diagnosis. Management There is no standard treatment for BPAN. Patients are managed by a team of medical professionals that recommends treatments based on current symptoms. After diagnosis, individuals with BPAN are recommended to get the following evaluations to determine the extent of their disease: Neurologic examination for dystonia, rigidity, and spasticity, and parkinsonism Evaluation of ambulation and speech Developmental assessment Assessment for physical therapy, occupational therapy, and/or speech therapy Medical genetics consultation Dystonia (involuntarily muscle contraction and spasms) can be debilitating and distressing to affected individuals and their caregivers. The therapies for managing dystonia vary in method and success rate. Therapies to manage dystonia can include: Intramuscular botulinum toxin Botox is injected in spastic, dystonic muscles to help them relax for a period of time Oral Artane (trihexyphenidyl) Baclofen (oral or intrathecal) One of the main drugs used to treat dystonia, usually first taken orally and divided into several doses each day In the intrathecal method, an implanted baclofen pump delivers medication directly into the spinal fluid Deep brain stimulation Used more often and has some evidence for benefit It involves surgical implantation of a lead, extension and battery pack (IPG) The lead contains 4 electrodes and is implanted in the globus pallidus region of the brain The extension connects the lead to the battery pack (IPG) The IPG is a battery-powered neurostimulator that is placed in the abdomen (or in some cases below the clavicle) Physical and occupational therapy May or may not be indicated for those who are only mildly symptomatic Medication to manage parkinsonism: The symptoms of parkinsonism can be treated with the same medications used in Parkinson’s disease. Treatment with dopamine agonist drugs (like Levodopa) must be started and monitored carefully. In the beginning, the dose is increased gradually until both the patient and doctor feel symptoms are under control. While taking dopaminergic drugs, individuals must be regularly monitored for adverse neuropsychiatric effects, psychiatric symptoms and worsening of parkinsonism. There is often short-term great benefit from Parkinsons medications. However, this usually only lasts a few years and is often eventually limited by the development of dyskinesias (a common side effect that creates unwanted movement). Even after a diagnosis has been made and the appropriate therapies have been chosen, it is recommended to continue long-term surveillance to decrease the impact of BPAN symptoms and increase quality of life. Long-term surveillance for BPAN can include: Medication for spasticity, dystonia, and/or parkinsonism Monitoring of individuals receiving dopaminergic drugs for parkinsonism for: Adverse neuropsychiatric effects Psychiatric symptoms Worsening of parkinsonism Nutrition Monitoring of height and weight in children Swallowing evaluation and regular dietary assessments Assure adequate nutrition Prevent aspiration Gastrostomy tube placement (as needed) Routine eye exams Regular assessments of walking and speech abilities Progression In most individuals, developmental delay and intellectual disability first appear in childhood. Once they reach adolescence or early adulthood, patients often start to regress and cannot regain the skills that they have lost. The average lifespan varies for individuals with BPAN, but due to improvements in medical care, more affected individuals are now living well into middle age. Research You can currently enrol in (or enrol your child in) a natural history study called "BPAN ready". The purpose of this study is to help us better understand the progression of BPAN and identify disease markers that can be used in future clinical trials. This study can be done completely from home and involves entering information every six months and doing a blood draw once a year. You can learn more about this study and enrol here: https://nbiacure.org/our-research/in-the-clinic/bpanready/ *Information Provided by NBIA Disorders Association How you can get involved: Action For BPAN is always looking for families and advocates to get involved with fundraising, If you or someone you know would like to get involved by either creating a fundraiser or doing a sponsored activity please see our Get Involved page and get in touch! Support

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

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