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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.

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

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

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. 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