Pediatric Brain Tumor Foundation’s Post

Wear A Hat Day in Support of Brain Tumour Research The month of March is all about raising awareness of brain tumours, something that hits close to home for me. I had a scare, but now I’m in the clear. My tumour has remained stable for 10 years now. Recently, I noticed some changes in my eyesight, balance, and hearing which always brings back the reality of how fragile life is. On social media, I’ve connected with so many brave souls battling brain cancer. It’s inspiring to see their courage, but also heartbreaking when some don’t make it. That’s why on March 28th, my team #TeamConnell and I are joining in on Wear A Hat Day, an event by Brain Tumour Research. We’re putting on hats to raise awareness and funds for research, hoping for a breakthrough that could help everyone fighting this disease. It’s shocking to think that every two hours, someone in England gets the devastating news of a brain tumour diagnosis. And survival rates are way lower compared to other cancers, with only 12% making it past five years after diagnosis. This highlights the urgent need for more research and funding. What’s even more tragic is that brain tumours affect more children and young adults under 40 than any other cancer. That’s why events like Wear A Hat Day are so important – they give us hope and a chance to make a difference. Let’s keep spreading awareness and supporting each other in this fight. Remember to wear a hat! And tag Brain Tumour Research when you do 🙏 it’s not just about raising awareness it’s also about raising funds. So, let’s dig deep this Wear A Hat Day and help bring hope to others. #WearAHatDay #BrainTumourResearch #BrainTumourAwareness #HelpLisa2HelpOthers #Repost4Hope https://lnkd.in/ei7uYe3V

overdiagnosis an euphemism for harms due to non-necessary treatment for slow-growing breast cancers that would never have affected a woman’s quality or length of life if left undiagnosed. Harm is also about false-positive results leading to more imaging, biopsies and non-necessary procedures see also https://lnkd.in/eKvb9gPV https://lnkd.in/eFniQbXu

Exciting new research alert! 📢 Our latest study together with the team of Prof. Mariam Aboian and the PNOC Foundation (Pacific Pediatric Neuro-oncology Consortium Foundation) compares 2D and volumetric analyses in assessing treatment response in paediatric gliomas with BRAF V600E mutation. 🧠🔬 🔍 Response assessment in paediatric gliomas is crucial for treatment evaluation, but current methods may have limitations. 📊 The authors, conducted manual volumetric segmentations and 2D measurements in 31 participants, analyzing 292 follow-up studies. Neuroradiologists evaluated responses using BT-RADS criteria and the tumor growth curves were described by a mechanistic model. 📈 While both 2D and volumetric analyses performed well in classifying partial responders, there were differences in longitudinal trajectories, impacting the transition from partial response to stable disease. 💡 Our findings underscore the importance of further studies to understand the implications of these differences on clinical decision-making and outcomes. 📝 The article here: https://lnkd.in/dCVvAcHb Kudos to all authors: Divya Ramakrishnan, Sarah Brüningk from our lab, Marc von Reppert, Fatima Memon, Nazanin Maleki, Sanjay Aneja, Anahita Fathi Kazerooni, Ali Nabavizadeh, MingDe Lin, Khaled Bousabarah, Annette Molinaro, Theodore Nicolaides, Micheal Prados, Sabine Mueller and Mariam Aboian. #pediatricgliomas #pediatric #neurooncology #medicalImaging #research #clinicaltrials

🌟 Exciting News from Our Research Group! 🌟 We are thrilled to announce the publication of our recent paper in the American Journal of Neuroradiology (AJNR): "Expanding the Imaging Spectrum of Polymorphous Low-Grade Neuroepithelial Tumor of the Young in Children." 🔍 Paper Details: Authors: Carmen Cerron-Vela, Fabricio Guimarães Gonçalves, Angela N Viaene, Luis Octavio Tierradentro-García, Arastoo Vossough PMID: 38331958 DOI: 10.3174/ajnr.A8145 🧠 About the Research: This groundbreaking study delves into Polymorphous Low-Grade Neuroepithelial Tumors of the Young (PLNTY), a rare type of brain tumor primarily affecting children and young adults. These tumors were only first described in 2017 and have recently been included in the 2021 5th World Health Organization Classification of Tumors of the Central Nervous System. 🔬 Key Insights: Our research presents a comprehensive look at the neuroimaging features in pediatric patients with histologically and molecularly proven PLNTY diagnoses. Notably, our findings suggest differences in presentation between children and adults, particularly concerning the prevalence of coarse calcifications. 🧩 Significant Findings: Coarse calcifications, common in adults, are less so in children and may develop over time. The presence of a transmantle-like sign and adjacent cortical dysplasia. Potential for seizure recurrence despite gross total resection of the tumor. 🌐 Implications: This study significantly expands our understanding of PLNTY in pediatric patients, offering valuable insights for both diagnosis and treatment strategies. It's a step forward in personalized healthcare for children and young adults dealing with these rare brain tumors. We invite our colleagues, researchers, and healthcare professionals to explore our findings. Let's collaborate and continue advancing our knowledge in pediatric neuro-oncology! #PediatricNeurooncology #PLNTY #BrainTumorResearch #AJNR #Neuroimaging #MedicalResearch #HealthcareInnovation #Neuroradiology

🧠 Day 25 of Brain Tumour Awareness Month. I speak with Matthew on the Aunty M Brain Tumours Talk Show. Matthew's life took an unexpected turn following a sudden seizure, which led him to discover he had an Astrocytoma. Matthew has a passion now for raising awareness of brain tumours and the need for more community. Discussed: 🎙️A Normal Day Turned Life-Changing Matthew recalls an ordinary Thursday in October, playing football and feeling fit, only to experience what he describes as being struck by lightning 60 minutes into the game. This moment marked the beginning of a completely heart-wrenching journey for him, leading to the diagnosis of an Astrocytoma after experiencing numerous seizures and undergoing various medical examinations. 🎙️The Diagnosis Process Despite not exhibiting classic symptoms typically associated with brain tumours, such as headaches, nausea, or memory issues, Matthew's ordeal began with what he initially thought was just fatigue from stress and work. However, after a focal seizure that dramatically altered his sense of normalcy, he found himself on a fast track to emergency medical consultations, including CT scans that confirmed the presence of a tumour. 🎙️The Emotional and Physical Journey Matthew openly discusses the emotional whirlwind following his diagnosis, highlighting the fear, devastation, and complex process of coming to terms with a condition described as treatable but incurable. He talks about undergoing a 10-hour brain surgery, which was just the start of his treatment journey involving radiotherapy and chemotherapy. 🎙️Finding Hope and Purpose Despite the challenges, Matthew finds solace in connecting with others who are experiencing similar experiences, participating in awareness campaigns, and leveraging the support of brain tumour charities. He stresses the significance of hope, peer support, and the need for increased funding for brain tumour research. 🎙️Giving Back and Making Noise Matthew's story is also one of advocacy and purpose. He shares his involvement with The Brain Tumour Charity campaign #ItsANoBrainer and the importance of using his voice to support research and awareness efforts. Through his journey, Matthew has discovered a new sense of purpose, contributing to a cause that affects many yet remains underfunded. 🎙️Listen Now! YouTube: https://buff.ly/3Tz7NFI Podcast: https://buff.ly/499tp16 #braintumourawarenessmonth #braintumourawarenessmonth2024

"Awareness drives funding, funding drives research, and research drives solutions," Project Outrun Founder Andy Shepperd reminds us. As #ChildhoodCancerAwarenessMonth comes to a close, we hope these clips from our July webinar, "Pediatric Patient Engagement: The Impact of Popsicles, Patches, and Shoes," have shined a light on the remarkable efforts of organizations like Project Outrun within the pediatric cancer community. Learn how you can help drive solutions at ProjectOutrun.org.

Important to recognize that presentation/prognosis of the 'same disease' can vary by patient age.

👩🔬 Meet our summer scholar Nazia Rafiq, researching AMPA receptors in Brain tumour related epilepsy at Trinity College Dublin. Brain tumour related epilepsy, BTRE, is a type of epilepsy caused by brain tumours, specifically gliomas. Often, seizures are the first presenting symptom, and for patients, they are debilitating and hard to control. Usually, they are closely related to the progression of the tumour. Seizures and the use of anti-seizure medication (ASM) can lead to reduced cognitive performance and dramatically reduced physical and mental health. Current treatments for BTRE are not very effective, which means there is a growing urgency to speed up the development of new treatments. Around a brain tumour, there is an area called the peritumoural region, which contains tumour cells that are trying to invade nearby healthy brain tissue. These cells use a neurotransmitter called glutamate to help them move and grow in the brain. They also release high levels of glutamate, which activates a receptor called the AMPA receptor. This leads to a reduction in the threshold required for seizures to occur and promotes tumour growth. Nazia’s project will use human brain tumour cell lines, live mouse brain tissue around the tumour, and new drugs to study how AMPA receptors contribute to seizures and tumour growth. The aim of this research is to improve treatment options for patients by developing drugs that target the AMPA receptor. Keep an eye out for more of our summer scholars over the coming weeks! #BreakthroughCancerResearch #SummerScholars #CancerResearch #MakeMoreSurvivors

Brilliant to attend the Brain Tumour Research 2024 manifesto launch last night in parliament. A very well organised, attended and managed session that was supported by both politicians and members of the APPGBT (the All-Party Parliamentary Group on Brain Tumours). The new manifesto can be found here https://lnkd.in/etVhdtCZ. On page two you can see the disparity between Breast Cancer and Leukaemia funding, and that given to Brain Cancers. The improvements in 10 year survival rates following diagnosis from 1971-2011 is stark and shows why so much more focus is still required on Brain Tumours. I’ve added some key information in the comments, and outlined the difference that Brain Tumour Research is looking to make. The passion and drive from key people across charity, industry and politics was clear last night, and we need to now turn that passion into very effective action. It is clear that the original commitments haven’t been met in improving things, and a real collective drive is required to make this happen. There are very personal stories behind every family impacted, and excellent insight was also provided right across the spectrum of stakeholders last night including politicians (including Guy Opperman https://lnkd.in/eYwQVyUS and Derek Thomas), those impacted (like Craig Russell https://lnkd.in/eUtp8M8c) and those working so hard to make a difference (like Babar Vaqas https://lnkd.in/eTXx9Bqh). #BrainTumourCure

We are proud to unveil our Reimagining Rehabilitation in Adults with Brain Tumours report, developed in partnership with Tessa Jowell Brain Cancer Mission: https://lnkd.in/erKMwx96   This short report summarises discussions from a multistakeholder meeting focused on how to improve brain tumour rehabilitation in the UK. A huge thank you again to all the experts (The Brain Tumour Charity, brainstrust) who joined us at our HQ in Cambridge last November to share their insights.   Key recommendations were to:   - Build the evidence base that quantifies patient need for rehabilitation by providing funding/infrastructure for allied health professional-led research   - Develop clinical consensus recommendations on rehabilitation to inform guidelines for adults with brain tumours   - Raise awareness of the benefits of rehabilitation for adults with brain tumours among all stakeholder groups   It is hoped that these recommendations, broken down into specific actions in the report, provide a roadmap that will improve quality of life for people with brain tumours across the UK. Now to maximise engagement, and drive change!   “Life will not wait for a cure – this is why we need to reimagine rehabilitation [for people with brain tumours]”   To find out more, please get in touch with Arianna Psichas.   #braincancer #braintumourawarenessmonth #rehabilitation #research #nhs #healthpolicy #CostelloMedicalHealthPolicy