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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 fund 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. 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 If you decide to fundraise for Action for BPAN, please read our fundraising guidance and disclaimer by clicking below. Fundraising Disclaimer 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. Engage@actionforbpan.co.uk

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

Read Emily'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 Emily and the honest impact BPAN has on her and her family. Emily's Story People always comment on Emily's sweet nature and her passion for life, she teaches us so much about perspective, living in the moment and determination. I hope with all my heart and soul that Emily's story continues to be a happy one, and I will do everything in my power to make that happen.. Kelly Emily's Mum x Facing adversity... It is so hard to know where to begin, I actually cannot stand thinking back to that awful day that Emily had her first seizure, a crazy 72 minute long eternity. It was a horrifically frightening thing to witness happening to your 15 month old little girl, we were all at home, Maxi, Emily, Oliver and I, and I remember Oli was upstairs in the shower when Emily became floppy and unresponsive, she was just staring over my shoulder, not looking at anything and dribbling, I held on to her repeating over and over, mummy’s here sweetie, I told Maxi to go get daddy quick as I needed him. When Oli saw Emily we quickly decided we’d get her in the car and take her to the hospital a couple of minutes away, on the way Emily’s lips started turning blue and twitching. Maxi was asking if Emily is ok and what’s wrong with her, all we could say was that she just needs help from the Dr and she’ll get better so try not to worry - this was obviously much easier said than done. When we arrived, we got taken in to a private room and I put Emily in a bed and stayed next to her as they put oxygen on, we explained what had happened, the Dr asked many questions and decided to give Emily rectal diazepam to stop (what we now knew was) the seizure, this did nothing and Emily was going blue by this stage. As I focused on talking to Emily, the Dr and Oli were calling an ambulance as we were at an outpatients hospital without an A&E department, we clearly hadn’t known this before, the Dr explained he was a GP and he’d reached the extent of what he could do, unbelievably the ambulance service still deprioritized Emily as we were at a medical facility, even though the GP was explaining this little girl is going to die if you don’t come immediately, he was advised to administer more rectal diazepam, and again this had no effect on poor Emily who’d been seizing now for about 30 minutes. Oli was reaching boiling point and the GP had put the phone on speaker saying the Dad was standing with him and to repeat what they had said, shockingly they said “we are busy” and hung up!! At this point we were desperate and the GP said let’s get her in my car, we’ll take her to the hospital ourselves, it’s her best chance as she is dying here, so in an instant we picked Emily and the oxygen tank up, grabbed Maxi from the waiting room, and were just getting outside when the paramedics turned up, Emily and I quickly got into the ambulance, explaining all the way what had happened leading up to this point, they strapped me and Emily into the bed and we were blue lighted for 20 minutes to the hospital, Emily was laying on me absolutely exhausted and so weak at this point, she looked like she was passing in and out of consciousness but the paramedic kept opening her eyelids and could see she was still seizing. I just kept talking to Emily so she knew I was right there with her. When we finally got to the hospital, it was a barrage of nurses and Dr’s coming to prod and pull at Emily, I remember needing to stand back but keeping hold of her tiny hand, answering all their questions and finally asking my own of weather she was still having the same seizure, again the answer was yes and my heart sank even further knowing this was truly bad. Oli flew in explaining that Maxi (who was 4 at the time) wasn’t allowed in here so we did a quick swap where Oli stayed with Em and I went to check on Maxi and tell him Emily was getting the Dr’s help now and what an amazing boy he’d been, he was shaken but he was so brave and strong. Oli had called our amazing friend “Auntie Lisa” who’d dropped everything to come pick Maxi up from the hospital and take him back to his best buddy Harrison to take his mind off this awful situation. When both Oli and I back were back in with Emily one of the Dr’s said they need to get a line in to one of Emily’s veins, this was an almost impossible task, it must have taken 20 attempts in each limb to get it in, we will never forget this twisted moment of elation at hearing Emily crying out and wriggling at the pain, it was more life than we’d seen in what had now been a 72 minute long seizure, and we believe that was what got it to finally stop wreaking havoc on Emily’s poor little body. One of the Dr’s noticed that Emily was only moving one side of her body and she was rushed away from us to get an immediate CT scan, the wait despite the hectic ER department that surrounded us felt like an intolerable silence, I can’t even tell you how long it was, but when Emily was back with us, she was out for the count, the diazepam well and truly taken hold, FINALLY stable and sleeping off her ordeal whilst we waited to understand why this nightmare had happened. We were transferred to the Paediatric ward and it was here, now half a day later, that Emily woke up and gave us her beautiful smile, seeing her getting back to her usual happy self was such a relief, I can’t even express with words. We saw the consultant that night, who believed Emily had experienced a temperature related seizure, known as a febrile seizure, caused by an infection in her throat, she was also teething so this had added to the increase in temp, she was put on two types of antibiotics one for bacterial and one for viral infections, and they wanted to observe Emily overnight and said they’d come back and discuss next steps with us the next day after reviewing the CT scan and other test results. After an uncomfortable but thankfully uneventful night, the consultant explained that febrile seizures are more common in children than we might realise, the CT scan showed slightly prominent ventricles in Emily’s brain but it wasn’t something that needed further investigation at this stage, we should keep a close eye on her while the infection clears up but they were comfortable that we could go home. Utterly exhausted and still riddled with worry, we went home. Emily got better, we got back to our usual routines and life returned to normal, aside from the underlying worry of what if there’s something more going on. Prior to this first seizure, we had started to worry that Emily wasn’t meeting the usual milestones and was not just on the slower end of the scale, our only previous experience was with Maxi and he was always ahead of expectations, so we convinced ourselves for a while anyway that it was an unfair comparison and Emily would get there in her own time. Emily was such a content and easy baby, she’s been besotted with her brother from day 1, watching his every move! Maxi would go into performance mode for her, jumping around like a mad thing! He always got Emily giggling away at his antics! Emily rolled over at 5 months old, started sitting unsupported at 6 months old, and then went to a bum shuffle to get around when she felt like it (which wasn’t often!), eventually crawling at 14-15 months old, followed by walking alone at 17 months old. Emily’s 2nd seizure happened 4 months after the first, it was much shorter and less intense than the first but still incredibly frightening to see, it was also the trigger point for us to realise there’s clearly something else going on with our little lady that we needed to get to the bottom of. Oli was out of the country working so immediately flew back and came straight to the hospital, Emily was awake and ready for Daddy cuddles, exhausted bless her - having a seizure is like running a marathon apparently. When we got to speak to the consultant he explained the need to put Emily on medication for Epilepsy, that we could choose between 2 anticonvulsant drugs, one of them hadn’t been used on children under 2 before and the other, Dr Google told us, was in the past linked to difficulties in pregnancies later on in life, and here starts the journey of having to choose between the lesser of two evils. We also got given emergency medication for the next time a seizure started, and trained on how to administer it, along with the staff at Emily’s nursery. It was reassuring to know we had a plan in place and knew what to do for next time, but Oli and I always said we felt like the seizures were a symptom of something underlying going on, not the main reason causing Emily to have the seizures, it was just a gut feeling but it drove us to push the NHS hard for answers. Even though we kept increasing the dose of anti-seizure medication unfortunately it didn’t control the seizures and on average it was every 2-3 weeks that we had to call an ambulance to get Emily back in to A&E, eventually we stopped calling the ambulance out, it pains me to say that we got used to dealing with it all ourselves, feeling we were wasting peoples time, our own included, each time we went in to hospital and had to stay for hours and hours of observations, always ending (thankfully) with Emily bouncing back to her usual happy little self. I have to say although we’ve got “comfortable” managing Emily’s seizure’s ourselves, there is always a thought lurking of is this going to be that fatal one that we all fear most, is the fact that we don’t call an ambulance anymore going to become a gut-wrenching regret.. But you push the thought away and try to carry on. We were set appointments for a variety of different investigative tests including an MRI, EEG, and metabolic tests, it all took so long, and needed constant chasing and pushing the system to get to the outcome of nothing of significance. It was honestly so disappointing, we just knew something wasn’t right. Developmentally we knew Emily was behind, having met and been assessed by various paediatric professionals, we had ongoing discussions with nursery, then pre-school staff on the extra support Emily required, so we kept pushing for answers in the hope we could gain a better understanding of how we can best support her moving forwards. In Nov 2019 we were put forward for the 100 Genome Project which carried out whole genome sequencing (WGS) which looks at all your genetic material all at the same time to look for changes in genes that can cause health problems. Emily, Oli and I had our blood tests done and were told it’d be a 3-4 month wait for the results. It ended up being early March that we were sent a letter from the John Radcliffe Hospital where we’d been for our genetic testing with the following question: Do you think Emily presents with symptoms of BPAN? No “dear parents”, no “following on from your recent tests” just that question - I recall opening the letter on my own thinking what on earth is BPAN, of course you go straight to Google to look it up and I cannot portray the devastation that engulfed me, the absolute terror of seeing words like life-limiting, neurodegenerative, no cure, painful muscle spasms, Parkinsonism, Altzheimers, early death… Needless to say I was floored, I somehow found myself in Oli’s arms incoherent and trying to explain why I was so upset, I ended up just passing over the letter, which he swiftly did exactly what I had done and looked it up.. I think the only way to describe what we were feeling was shocked and in disbelief. We managed to get a call arranged with Emily’s Neurologist and Epilepsy paediatrician that same day, on that call they explained that they didn’t believe Emily had BPAN, that the chance was so miniscule that it wasn’t going to turn out that way for her, that we needed to wait for the genetic results to be 100% sure but it was their belief that it wouldn’t turn out to be BPAN - the odds were on our side. We also had an explanation of why we had received the letter in the way that we had - apparently one of the secretaries should have ticked a box in the system which wouldn’t of copied the letter to parents, the letter was only ever meant to go to Emily’s Neurologist - thinking back to the time between then and the day it was confirmed that Emily had BPAN, is a complete blur, I honestly have no idea how we carried on with day to day life, we were most definitely in survival mode AND managing all that the Covid-19 lockdowns had to offer at the same time. 3 months after receiving that letter we were asked to attend an online meeting with a paediatric Neurologist called Professor Manju Kurian at Great Ormond Street hospital (GOSH), she wanted to meet Emily via video call and do an assessment, we spent a couple of hours talking about all things Emily - developmental delays, seizure types and frequency, Emily’s little quirks like pointing with her middle finger and repeatedly patting her mouth with her hand, we gave so much detail, often laughing whilst recalling how unique our girl is. It felt good to be listened to, it felt like we were moving forwards towards potential answers which at this point we were desperate for. Professor Kurian explained they’d be in touch with next steps soon, and it was only a couple more weeks that Emily and one parent (Covid rules) were invited physically into GOSH - 06/07/2020 a date as etched into our memories as Maxi & Emily’s birthdays. Diagnosis day. Maxi was with our lovely friends the Mordt’s whilst Oli, Emily and I drove into London, the plan being Emily and I to attend the appointment whilst Oli waited in the car, on the way there I got a third call from GOSH to check that only 1 parent was going to enter the building, once again I said yes we knew that and only my daughter and I will enter. There were no other words to be said on the journey, I can honestly say the dread and anticipation built with every passing minute. I feel sick now just thinking back. Oli dropped us at the entrance and I tried and failed to put a mask on Emily, whilst she was trying to grab at mine, not understanding at all why I had this thing covering my mouth. We walked through the security area, found the lifts and where we needed to go, signed in and waited to be called in, it took less than a minute for Professor Kurian to call us into her room, as we entered she asked where Dad was, I said we’d had three calls saying he wasn’t allowed in, she asked if he was nearby so I said yes just in the car park, so she then said call him to come in, he should be hare, it was this precise moment that my mind went in to freefall as I knew what was coming, I knew it was BPAN, I somehow made the call, I somehow managed to make sure Emily wasn’t grabbing equipment or doing something she shouldn’t, I was numb, waiting for Oli to arrive was only a few minutes and then we were there together, Emily sat on Oli’s lap. Professor Kurian looked up from her notes on her lap with a sympathetic gaze, both knowing what she was about to say, our greatest fears confirmed out loud. Our hearts literally broke right there and then, it’s indescribable the pain you feel when you’re told your 4 year old daughter has a rare, life-limiting, neurodegenerative disease that has no cure. Through our tears our questions centred around when does the devestating degeneration phase start, when does Emily start to loose her skills, the skills we and so many others in her life have been working so hard to teach her, Professor Kurian explained typically in adolescence (10-19), but it can happen earlier or later. We were quiet, depleted and ready to get out of there, both Oli and I were in our own heads driving back in a very fitting wet, grey & silent journey home whilst Emily napped. We were in a state of shock and disbelief, in that moment everything had changed but Emily hadn’t - she was the same right in front of us. Countless people have said to us “we don’t know how you do it” and obviously there is no choice, however focusing in on Emily and seeing her pure love and joy for life has always kept us going, the same goes for Maxi who we need to protect through this difficult path, they both have an amazing ability to keep your feet on the ground moving forwards, focusing on what’s really important. For me, I knew I had to keep active to keep sane so I found solace in running and given that fundraising for a cure was without question something we needed to do, I started a JustGiving campaign with the commitment that I would run 30km a week and volunteer 1 day a week to charitable causes. Giving back was incredibly rewarding, I helped in a special needs preschool playing with the kids and chatting and making tea for the mums, and I was a Covid volunteer helping on vaccinations sites, making friendly calls to elderly isolated people and running errands. As people learnt about Emily’s diagnosis, they wanted to do anything and everything to help us raise funds. We truly have the absolute BEST network of family, friends & colleagues who did bake sales, completed multiple triathlons, organised swimathons and climbed mountains for Emily!! We are so fortunate to have so many insanely brilliant humans close to us and willing to help #forevergrateful We agreed with GOSH Charity that the funds we were raising via JustGiving would be ring-fenced for BPAN research (though still needing to go through due-process and approvals) by mid 2022 we reached £100,000. This then meant that Professor Kurian was able to go through the GOSH Charity grant call, and apply for a further £150,000 based on her BPAN Gene Therapy proposal that was up against 1000’s of other proposals. Incredibly this resulted in a 3 year project which started in May 2023 and will run until 31st May 2027. To every single person that has supported us, I want to say another HUGE thank you, it truly means everything to us. For more details on the project press here... Oli and I had always discussed creating a charity for Emily, to formalize the efforts of raising more funds towards finding a cure, but life was already bursting at the seams with work, school hopping, seizures, constant doctor and therapy appointments, advocating for Emily’s needs to be met, feeling eternally exhausted due to co-sleeping with Emily who is a very very early bird! It felt like there wasn’t space for it, until Emily’s seizures stopped with a new medication - and lovely Nicole finally convinced me there was never going to be a good time, our lives are always going to be hard, but together we can support each other and just crack on! I love Nicole’s unwavering motivation and together with my firm belief that we absolutely can cure BPAN, we make a great team to run Action for BPAN, the UK’s first charity focused fully on improving the lives of those affected by this awful disorder. Read More Donate

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

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

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

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

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!

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

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!

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

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

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

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

Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience.​ Join us in our mission to fund vital research and raise awareness about BPAN. 1/6 Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience. Join us in our mission to fund vital research and raise awareness about BPAN. Support Our Cause About Us Action for BPAN was founded in 2024 by two mothers, Kelly Sayers and Nicole Harper, whose daughters have both been diagnosed with BPAN. Our mission is to bring hope to families by supporting them, raising awareness and generating funds for BPAN research. Thanks to the support of our growing community and volunteers, the UK is joining the global effort to find a treatment or cure. Driven by our love and dedication to our incredible daughters, and with your support, we can make a meaningful difference in the lives of those affected by BPAN. Meet The Team Meet Isabella Isabella is our joyful, vibrant 6-year-old daughter, who was diagnosed with BPAN at the age of 3. Her future is uncertain - she may become part of a wonderful story where research leads to a cure or treatment in time, or a heart breaking story of a little girl that has to suffer BPAN's degenerative symptoms like Alzheimer's, Parkinson's, and ultimately, the loss of her movement and communication skills. Our mission is to ensure that Isabella and others like her can live a happy, healthy life, and to prevent future generations from having to endure a life with BPAN. Read Isabella's Story Meet Emily Emily is the youngest of our two incredible children, born on 4th April 2016, she was just 4 years old when we received her BPAN diagnosis. Emily is a very special little girl who leaves a lasting impression on everyone she meets, she is full of love, laughter and happiness. Emily gives the best hugs and has a way, even with her limited communication, of charming you into getting exactly what she wants! Whether that's another play fight with her Daddy or a 3rd and 4th story out of Mummy at bedtime! Read Emily's Story What is BPAN Beta-propeller protein-associated neurodegeneration (BPAN ) is a rare and devastating genetic disorder caused by mutations in the WDR45 gene. This condition leads to the accumulation of iron in the brain , resulting in progressive neurodegeneration . The symptoms experienced by affected children resemble those of Alzheimer's disease , Parkinson's disease , Seizures and dystonia , ultimately leading to a loss of motor and communication function's . Time of degeneration varies but typically begins during adolescence, a time when most children are moving forward into the world. Unfortunately, for children with BPAN, this is when they begin to lose the skills they have worked so hard to develop. Learn More LATEST POSTS 1 2 3 4 WHAT WE DO Our Impact We understand the immense challenges faced by families affected by BPAN, and at Action for BPAN, we are dedicated to creating a meaningful impact. Through the funds we raise, we support vital BPAN research, drive awareness initiatives, and organize diverse fundraising efforts, including community events, sponsored challenges, corporate partnerships, and online campaigns. Beyond funding research, we are deeply committed to being there for affected families, offering support, understanding, and guidance through our own lived experiences. Our ultimate goal is to accelerate the development of effective treatments or a cure while providing hope and a strong sense of community for those navigating this journey. Research At Action for BPAN, we are committed to ensuring our community is kept informed about the progress of BPAN research as much as possible. We understand how isolating and frustrating it can be to feel uninformed, especially when the stakes are so high for families affected by this devastating condition. That’s why transparency and communication are at the heart of what we do. We will share regular updates through our website and social media channels, providing the latest news on research breakthroughs and milestones achieved. Whenever possible, we’ll collaborate directly with researchers to relay accurate and accessible information. Our goal is to ensure that no family feels uninformed or unsupported in this journey. Research Updates Fundraising Looking to make a difference? Amazing! Join our fundraising efforts and help us come up with new and creative ideas to support Action for BPAN. Your involvement can have a profound impact on the lives of those affected by this devastating condition. Together, we can accelerate the pace of research and bring hope to families who need it most. Fundraising is not only crucial but also an incredibly rewarding and positive experience. If you’re unsure where to start, we’re here to guide and coach you every step of the way, helping you turn your passion into action. Whether it’s organizing a community event, taking on a personal challenge, or finding new ways to raise awareness, you’ll be part of a movement that truly makes a difference. Join us and see how empowering it can be to help change lives while building connections and spreading hope. Help us Fundraise Volunteering Are you passionate about making a difference? Join us as a volunteer and use your unique skills and experience to support our mission. We welcome individuals who share our dedication to creating meaningful change in the BPAN community and are committed to making a positive impact. Whether you can offer your time, expertise, or creative ideas, your contribution will play a vital role in driving our work forward. Become a part of something truly special and help us bring hope to families affected by BPAN. Together, we can make a lasting difference. Apply to Volunteer

Access downloadable fundraising materials to help you get started with your fundraising efforts for Action for BPAN. Find tools and resources to support your mission to raise awareness and funds for BPAN research. Fundraising Materials If you need any assistance, advice, or help creating materials for your fundraiser, especially if you have something specific in mind, then please don't hesitate to reach out. We’re here to support you and will do our best to assist in any way we can. If you would like to fundraise for Action for BPAN, please remember to register your fundraising efforts using the contact form at the bottom of this page. Action for BPAN Sponsorship form Action for BPAN Totaliser Action for BPAN Bunting (Pink) Action for BPAN Bunting (Blue) Please let us know if you would like us to add to your own fundraisers QR code to the totalizer. More fundraising materials will be available soon... Get in touch! At Action for BPAN, we are always ready to help. If you have any questions or concerns, please feel free to reach out to us anytime. First name(Required) Last name Email(Required) Subject(Required) Donation Fundraising Spreading Awareness Message for Kelly Message for Nicole Partnership Support Other Message(Required) Submit

Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience.​ Join us in our mission to fund vital research and raise awareness about BPAN. Developing gene therapy for a rare neurodegenerative condition called Beta-propeller Protein-associated Neurodegeneration. Project Leader: Prof. Manju Kurian Start Date: 1st June 2024 End Date: 31st May 2027 INTRODUCTION Professor Manju Kurian of UCL Great Ormond Street Institute of Child Health is developing a gene therapy for children with BPAN. Her hope is that this will ultimately lead to a safe and effective new treatment that can help slow disease progression - transforming the lives of children born with this debilitating condition. WHY BPAN is a rare genetic condition that progressively damages the nervous system, leading to a range of distressing symptoms that gradually worsen over time. A child born with BPAN typically experiences early-life seizures (epilepsy), learning difficulties and delayed development, speech problems and movement issues affecting walking and everyday activities. In late adolescence or early adulthood, intellectual decline begins, leading to dementia, along with worsening movement problems such as involuntary contractions and tremors. There is no cure, and children's lives will often be cut short. New treatments are desperately needed that can slow down or stop the disease's progression. HOW BPAN is caused by a faulty gene, called WDR45, which usually produces a protein that plays an important role in removing waste material from cells. Without this protein, toxic substances build up in nerve cells, leading to damage and cell death. Researchers aim to develop a new treatment using a harmless virus to deliver a healthy copy of the WDR45 gene directly into the brain. To test this gene therapy's safety and effectiveness, they will create two lab models: Firstly, they will generate 'mini-brains grown from reprogrammed patient skin cells. Secondly, they will use a mouse model with similar features to the human disease. Successful results could lead to future clinical trials in children with BPAN. IMPACT If successful, this could lead to a new treatment for BPAN that can halt disease progression, increase life expectancy and provide a better quality of life for children and their families affected by this devastating condition. We will post updates on the project across our socials as soon as possible.

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

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

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