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Dr. Apostolos Papandreou joins the Action for BPAN team as a Medical and Research Advisor and founding member of our growing Medical Advisory Board Dr. Apostolos Papandreou, Consultant in Metabolic Medicine and Rare Neurological Disorders at Great Ormond Street Hospital and Honorary Associate Professor at UCL, has joined the Action for BPAN Medical Advisory Board. Dr. Papandreou is internationally recognised for his work in rare neurological conditions, with a particular focus on BPAN (Beta-Propeller Protein-Associated Neurodegeneration) and related neurodegeneration with brain iron accumulation (NBIA) disorders. He has published extensively on BPAN, contributed to international guidelines, and works closely with families and researchers worldwide to improve care and accelerate progress towards therapies. His research has also explored the use of cardiac glycosides as a potential treatment for BPAN, opening up exciting new possibilities for the future.    His clinical expertise, research knowledge, and dedication to families living with BPAN make him an invaluable addition to our medical advisory board. We are honoured to have his input and support as we continue driving forward research, advocacy, and support for the BPAN community.  Exciting times lie ahead for Action for BPAN and our community, as progress continues, connections strengthen, and awareness of BPAN spreads 💙🩷

What an unforgettable Action for BPAN Golf Day 2025 at Burhill Golf Club ! A massive thank you to our sponsors Nozomi Networks , Hedin Automotive London , Inner Wings Foundation , AliDeck , @Vulcanconstruction, @eliteav, @Korbyt, VJ Technology , @Bradbyswealthmanagement, Zenith Black , @Rynosystems, James Hardie , NGL Golf . Check out the full gallery here 🏌️‍♀️⛳ #ActionForBPAN   #OverwhelmingSupport   #GolfDay2025 #CorporateSocialResponsibility #GeneTherapy   #Partnerships

✨ 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

Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience.​ Join us in our mission to fund vital research and raise awareness about BPAN. 1/4 Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support based on our own lived experience. Join us in our mission to fund vital research and raise awareness about BPAN. Support Our Cause About Us Action for BPAN was founded in 2024 by two mothers, Kelly Sayers and Nicole Harper, whose daughters have both been diagnosed with BPAN. Our mission is to bring hope to families by supporting them, raising awareness and generating funds for BPAN research. Thanks to the support of our growing community and volunteers, the UK is joining the global effort to find a treatment or cure. Driven by our love and dedication to our incredible daughters, and with your support, we can make a meaningful difference in the lives of those affected by BPAN. Meet The Team Meet Isabella Isabella is our joyful, vibrant 6-year-old daughter, who was diagnosed with BPAN at the age of 3. Her future is uncertain - she may become part of a wonderful story where research leads to a cure or treatment in time, or a heart breaking story of a little girl that has to suffer BPAN's degenerative symptoms—like Alzheimer's, Parkinson's, and ultimately, the loss of her movement and communication skills. Our mission is to ensure that Isabella and others like her can live a happy, healthy life, and to prevent future generations from having to endure a life with BPAN. Read Isabella's Story Meet Emily Emily is the youngest of our two incredible children, born on 4th April 2016, she was just 4 years old when we received her BPAN diagnosis. Emily is a very special little girl who leaves a lasting impression on everyone she meets, she is full of love, laughter and happiness. Emily gives the best hugs and has a way, even with her limited communication, of charming you into getting exactly what she wants! Whether that's another play fight with her Daddy or a 3rd and 4th story out of Mummy at bedtime! Read Emily's Story What is BPAN Beta-propeller protein-associated neurodegeneration (BPAN ) is a rare and devastating genetic disorder caused by mutations in the WDR45 gene. This condition leads to the accumulation of iron in the brain , resulting in progressive neurodegeneration . The symptoms experienced by affected children resemble those of Alzheimer's disease , Parkinson's disease , Seizures and dystonia , ultimately leading to a loss of motor and communication function's . Time of degeneration varies but typically begins during adolescence, a time when most children are moving forward into the world. Unfortunately, for children with BPAN, this is when they begin to lose the skills they have worked so hard to develop. Learn More BPAN IN NUMBERS 500 The estimated number of cases worldwide known to have been diagnosed with BPAN, most are females. Although the actual prevalence could be higher due to underdiagnosis or misdiagnosis. 5-10% Of the 500 cases worldwide is the estimated percentage of boys diagnosed with BPAN. 10-19 The typical age range of degeneration although there are many known cases earlier and later. 2012 The WDR45 gene was discovered in 2012 by Dr. Tobias Haack. Haack's Discovery was the result of a collaborative study with Dr Susan Hayflick's Lab at Oregon Health and Science University. *Disclaimer. The statistics above are based solely on currently available data and may not represent comprehensive or future information. WHAT WE DO Our Impact We understand the immense challenges faced by families affected by BPAN, and at Action for BPAN, we are dedicated to creating a meaningful impact. Through the funds we raise, we support vital BPAN research, drive awareness initiatives, and organize diverse fundraising efforts, including community events, sponsored challenges, corporate partnerships, and online campaigns. Beyond funding research, we are deeply committed to being there for affected families, offering support, understanding, and guidance through our own lived experiences. Our ultimate goal is to accelerate the development of effective treatments or a cure while providing hope and a strong sense of community for those navigating this journey. Research At Action for BPAN, we are committed to ensuring our community is kept informed about the progress of BPAN research as much as possible. We understand how isolating and frustrating it can be to feel uninformed, especially when the stakes are so high for families affected by this devastating condition. That’s why transparency and communication are at the heart of what we do. We will share regular updates through our website and social media channels, providing the latest news on research breakthroughs and milestones achieved. Whenever possible, we’ll collaborate directly with researchers to relay accurate and accessible information. Our goal is to ensure that no family feels uninformed or unsupported in this journey. Research Updates Fundraising Looking to make a difference? Amazing! Join our fundraising efforts and help us come up with new and creative ideas to support Action for BPAN. Your involvement can have a profound impact on the lives of those affected by this devastating condition. Together, we can accelerate the pace of research and bring hope to families who need it most. Fundraising is not only crucial but also an incredibly rewarding and positive experience. If you’re unsure where to start, we’re here to guide and coach you every step of the way, helping you turn your passion into action. Whether it’s organizing a community event, taking on a personal challenge, or finding new ways to raise awareness, you’ll be part of a movement that truly makes a difference. Join us and see how empowering it can be to help change lives while building connections and spreading hope. Help us Fundraise Volunteering Are you passionate about making a difference? Join us as a volunteer and use your unique skills and experience to support our mission. We welcome individuals who share our dedication to creating meaningful change in the BPAN community and are committed to making a positive impact. Whether you can offer your time, expertise, or creative ideas, your contribution will play a vital role in driving our work forward. Become a part of something truly special and help us bring hope to families affected by BPAN. Together, we can make a lasting difference. Apply to Volunteer LATEST POSTS

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

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. Ways You Can Help Setup a Page! Face your Fear Host an Event Shave or Grow Something! Get Active! Overcome a Personal Challenge Previous Sponsored Challenges See below some of the amazing work that has already been done to fundraise for the research and treatment of BPAN! Slide Title This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content.