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

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

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

Nicole Harper and I are absolutely thrilled to announce the official launch of our charity  Action for BPAN . This is such an exciting milestone which has to start with an enormous THANK YOU to everyone who has contributed to the previous few years of fundraising efforts, which I am delighted to share that Professor Kurian, a leading academic paediatric neurologist at Great Ormond Street Hospital and UCL, has used the funds to initiate the UK's first research project focused on developing curative gene therapy for BPAN! This groundbreaking research offers real hope for effective treatments for children living with this devastating life-limiting, neurodegenerative disease. Your support has been instrumental in reaching this pivotal milestone, creating a wealth of hope and forward-moving action that seemed unimaginable just a couple of years ago.  Inspired by this progress, Nicole and I have founded Action for BPAN to continue driving change, advocating for families, funding research, and creating brighter futures for our daughters and the hundreds of others diagnosed with BPAN. We would love you to learn more about our mission and ongoing work by visiting our website:  www.actionforbpan.com . For our first fundraiser,  Step Up for BPAN , we’re climbing  Snowdon  on Saturday, 21st June, and invite families and friends affected by BPAN to join this meaningful challenge. Together, we’ll raise funds and awareness while symbolising hope and commitment. If you'd like to join us, reach out via our Facebook page or email us on  actionforbpan@gmail.com . https://www.justgiving.com/campaign/stepupforbpan Your support has brought us this far - from the bottom of our hearts thank you for believing in this journey with us.  Please donate if you can, share, follow and spread the word about Action for BPAN across socials. Together, we’re making a difference. #actionforbpan #stepupforbpan #forevergrateful Kelly & Nicole Co-founders of Action for BPAN & Proud Mums of Emily and Isabella

Welcome to the world of BPAN, a rare neurodegenerative disorder that affects individuals worldwide. Today, we delve into BPAN and shed light on the efforts of Action for BPAN , a UK-based charity dedicated to advancing research and supporting families impacted by this condition. BPAN is a genetic disorder that primarily affects the nervous system, leading to a range of symptoms, including developmental delays, seizures, movement disorders, and intellectual disability. The condition is caused by mutations in the WDR45 gene, which plays a crucial role in regulating autophagy—a vital process for cellular maintenance, renewal, and healthy brain function. Autophagy, in simple terms, is a cellular mechanism that helps maintain cell health by degrading and recycling damaged or unnecessary components. In BPAN, mutations in the WDR45 gene disrupt autophagy, leading to cellular dysfunction and the accumulation of iron in the brain—a hallmark of the disease. Action for BPAN is at the forefront of the fight against this debilitating condition. The organization raises funds to support research initiatives focused on discovering a cure or effective treatments for BPAN. Through these efforts, they aim to accelerate the pace of research and provide hope to families navigating the challenges of this condition. In addition to funding research, Action for BPAN provides vital resources and information for families affected by BPAN. From educational materials to support networks, the charity serves as a lifeline for those dealing with the complexities of this rare disease. By fostering a community of understanding and compassion, they empower families and individuals impacted by BPAN. By raising awareness and encouraging collaboration among researchers, healthcare professionals, and families, Action for BPAN is paving the way for a brighter future for those living with this condition. Their unwavering dedication and commitment are making a meaningful difference in the lives of individuals with BPAN and their loved ones. Please support the crucial work of Action for BPAN. Together, we can bring hope and make a difference for those affected by this rare and challenging disorder.