Nerve Tumours UK

Today we’re spotlighting the amazing work of published author and rare disease awareness campaigner Emily Owen. Emily was diagnosed with NF as a teenager and suffered irreversible hearing loss after surgery at the age of 21. Emily is a passionate advocate for greater inclusivity in public spaces for those with limited hearing. In a recent interview for the Christian Daily. she details her experiences with hearing loss at her local church offering advice and recommendations for a future where every space works for everyone. https://lnkd.in/e4gJahxf #NFAwareness #inclusivespaces #nervetumoursuk

🎉 Huge congratulations to this week’s lucky winner, Mr. R! 🤑 🎉 Win £1,000 this September! 🎉 Our September Super Draw! Win a £1,000 Sainsbury's eGift Card or take home £1,000 in cash. https://lnkd.in/eQ9rTC3b #SuperDraw #WinBig #Lottery #Sainsburys

Brrr, feeling the chill a bit?🍂 A tea or a coffee and a warm friendly chat may be just what you need ☕ Come and meet other NF patients at the September NF Coffee Club & Forum at Guy’s Hospital tomorrow (19/09/24) at 1pm, and every third Wednesday of the month following if you are a registered patient! This month we’ll have a talk on NF updates and research news from the NF Global conference in Brussels. To book your place, please email gst-tr.guysnfnurses@nhs.net with the subject title ‘coffee’, or leave a message on 020 7188 1029 to register your interest. #NFSupport #GuysHospital #CoffeeClub #NFCommunity #PatientCare

🌟 Meet Our Trustees: Professor Meena Upadhyaya OBE 🌟 Say hello to Prof. Meena Upadhyaya OBE, a distinguished trustee at Nerve Tumours UK. With a long-standing career in NF1 research and dedication to improving patient care, Prof. Upadhyaya’s contributions are invaluable. Her passion for enhancing the quality of life for NF1 patients inspires us all. We’re grateful for her ongoing support. The dedication of charity trustees is pivotal in driving our mission forward, and Prof. Upadhyaya’s involvement underscores the importance of their passion and expertise. Her commitment to research and patient care highlights the vital role trustees play in supporting our cause. Discover more about Prof. Upadhyaya and our trustees at https://lnkd.in/evAVASN2 #MeetOurTrustees #NerveTumoursUK #Neurofibromatosis #MedicalResearch #DiversityAndInclusion #Leadership #ResearchExcellence #NF1 #TrusteeSpotlight

🌟 Meet Our Trustees: Jonathan Bruce - Vice Chair and Social Care Expert 🌟 Meet Jonathan Bruce, our Vice Chair at Nerve Tumours UK. With extensive experience in the social care sector and a personal connection through his son Henry’s NF1 diagnosis, Jonathan’s leadership and strategic support are crucial to our mission. We appreciate his dedication and efforts in fundraising. The role of charity trustees is essential for steering our organisation towards its goals. Jonathan’s commitment exemplifies the passion and expertise that are fundamental to our success. His personal and professional contributions greatly enhance our ability to make a difference. Learn more about Jonathan and our other trustees at https://lnkd.in/evAVASN2 #MeetOurTrustees #NerveTumoursUK #Neurofibromatosis #SocialCare #Leadership #CharitySupport #TrusteeSpotlight

🎉 Huge congratulations to this week’s lucky winner, Mr. G! 🤑 🎉 Win £1,000 this September! 🎉 Our September Super Draw is here! You could win a £1,000 Sainsbury's eGift Card or take home £1,000 in cash. Imagine what you could do with that! Tickets are just £1 each, and the more you enter, the better your chances. Don’t miss out—get your tickets by 28th September! 🎟️ #SuperDraw #WinBig #Lottery #Sainsburys

🌟 Closing this Year’s "Everybody is Born a Champion" Campaign 🌟 As we bring our "Everybody is Born a Champion" campaign to a close, we want to reflect on the incredible journey we’ve taken together. This campaign, in collaboration with RBH Creative Communications for the third consecutive year, has been a powerful celebration of resilience, strength, and the achievements of those living with NF. This year, our campaign featured the remarkable Thomas Young, MBE, a GB Para-Sprinter and Patron of Nerve Tumours UK, who has shown us all what it means to be a true champion. Through a series of digital media blasts across 34 rail hubs nationwide, during May, August, and September, we’ve highlighted Thomas’s inspiring journey—culminating in his tremendous effort at the games last weekend. Thomas’s story has reached millions, shining a light on NF and the importance of support, understanding, and community. From World NF Awareness Days to the lead-up to last weekend, we’ve been proud to share his message and raise awareness at key locations like London King’s Cross, Liverpool Lime Street, and Glasgow Central. We want to extend our heartfelt congratulations to Thomas for his dedication and perseverance this year. Your journey has inspired countless individuals, and we are so proud of everything you have achieved. Thank you to everyone who supported this campaign, shared our posts, and helped raise awareness for NF. A special thank you to our partners— RBH Creative Communications, JCDecaux, Network Rail, and Yaura Agency—for their continued support in making this campaign a success. While the campaign may be ending, you can still read all about the campaign here: https://bit.ly/4dP9CY2 #EverybodyIsBornAChampion #MakeNFVisible #NF1Awareness

🌟 Meet Our Trustees: Matt Jones 🌟 Get to know Matt Jones, a trustee at Nerve Tumours UK. As a director at M&G plc with expertise in structured finance and a personal connection through his brother’s NF2 diagnosis, Matt’s support and fundraising efforts are crucial to our mission. We appreciate Matt’s dedication and financial insight. Charity trustees are essential to our success, and Matt’s involvement exemplifies the passion and expertise that propel our organization forward. His contributions and commitment to our cause play a significant role in our ongoing efforts to make a difference. Find out more about Matt and our other trustees at https://lnkd.in/evAVASN2 #MeetOurTrustees #NerveTumoursUK #Neurofibromatosis #CharityLeadership #Fundraising #FinancialExpertise #TrusteeSpotlight

🌟 Everybody is Born a Champion! 🌟 We are proud to celebrate the incredible achievements of our Patron, Thomas Young, who continues to inspire us with his resilience and dedication. As part of our "Everybody is Born a Champion" campaign, Thomas’s story is now featured on posters at train stations across the UK. His journey as an athlete and advocate for NF1 is a powerful reminder of what can be achieved with determination and the right support. Join us in spreading awareness—share Thomas’s story and support the #MakeNFVisible movement. 👉 Learn more about Thomas and NF1: https://bit.ly/44mEXxj #EverybodyIsBornAChampion #Inspiration #NF1Awareness #ThomasYoung RBH Creative Communications

🌟 Proud of Your Journey, Thomas! 🌟 While the podium may not have been reached this time, we are immensely proud of Thomas Young’s journey and dedication. Your efforts have inspired us all, and your impact goes beyond any race. Keep pushing forward, Thomas—your resilience and spirit are what make you a true champion! 💪 #ChampionMindset #Inspiration