Foundation for Angelman Syndrome Therapeutics UK (FAST UK)

🌟 A Huge Thank You to Tamsin Keogh and the Art for Angelman Team 🌟 We want to give a massive shoutout to Tamsin Keogh, the driving force behind Art for Angelman 2024. It was Tamsin’s vision, dedication, and hard work that brought this incredible event to life! 🎨✨ A heartfelt thank you also goes out to the amazing team that supported her every step of the way, Andrea Street, Emma MacHale, Lucy Gillingham, and Poppy Macdonald-Brown. Your dedication and efforts helped raise an astounding £65,300 for FAST UK and we couldn’t be more grateful. 🙌💖 Together, you’ve all made a huge impact on the Angelman community, and we’re so lucky to have supporters like you! 💙 #ArtForAngelman2024 #FASTUK #angelmansyndrome #CureAngelman #angelmansyndromeawareness

✨ Exciting news for our Angelman community! Upcoming Event: Angels Alton Towers Short Break 2025! ✨ 🗓️ Dates: Friday, 14th February - Tuesday, 18th February 2025 This much loved event, led by the amazing Linda Holmes has been creating special moments for 12 years. It’s the perfect way to celebrate Angelman Day with friends, family, and the whole community! 💙 Ready to be a part of this unforgettable experience? Register your interest today using the link below: 👉 https://lnkd.in/e39Sm8xm We’re looking forward to seeing you there! Let’s make some magical memories together! 🎢💫 #AngelmanCommunity #AngelsShortBreak #AltonTowers #FASTUK #FamilySupport

💚 WORLD MENTAL HEALTH DAY 💚 Today, on World Mental Health Day, we’re highlighting the importance of mental health within the Angelman syndrome community. Living with a rare genetic condition like Angelman syndrome can present unique challenges, including mental health struggles for individuals and their families. At FAST UK, we believe that advancing research is key to finding new treatments and, ultimately, a cure. Our mission is to bring hope to every individual and family affected by Angelman syndrome, improving quality of life through groundbreaking scientific discovery. 💡 Research isn’t just about finding a cure; it’s about understanding the whole picture, including the mental and emotional well-being of those impacted. By funding critical research, we aim to make life better for everyone affected by Angelman syndrome, helping to ease their journey in every possible way. 📢 Today, let’s break the silence, raise awareness, and show our support for the mental health of those living with rare conditions and their loved ones. #WorldMentalHealthDay #AngelmanSyndrome #MentalHealthMatters #FASTUK #itsoknottobeok #HopeThroughResearch #TogetherForACure #BreakTheStigma #SupportAndScience

🗓️ October is International Augmentative and Alternative Communication (AAC) Awareness Month! At FAST UK, we know how important AAC is for many individuals with Angelman syndrome. These devices and systems help unlock the power of communication and connection for so many in our community. 💬✨ We’d love to hear from you! How has AAC impacted your loved one’s life? Share your stories and experiences in the comments to help raise awareness and inspire others. #aac #AACAwarenessMonth #AngelmanSyndrome #FASTUK #communicationforall #inclusion #angelmanawareness

The Phase 3 Efficacy and Safety Study of GTX-102 (ASO) in Pediatrics, sponsored by Ultragenyx, is now listed on ClinicalTrials.gov. Interested in learning more? ASF and FAST will be hosting a community webinar about the trial, named Aspire, with the Ultragenyx team on Oct 23, 2024 at 1:00pm EST. Submit your questions and register below. Submit your questions and register below: https://buff.ly/4eIGvFY

This past weekend, Maxsea and Grace completed the Inflatable 5K in Newbury in support of Maxsea's brother, Reef, who has Angelman syndrome. 👏 We are so proud of their incredible effort and determination to raise awareness and funds for FAST UK! Maxsea said: "I have been inspired by my parents to do this for my brother because I think it's so cool they do these things for him. As annoying as he gets, he makes up for it by constantly trying to hug me and loving me as much as I love him." 🙏 We are deeply grateful to everyone who sponsored and supported them. Your generosity makes a real difference in the lives of those living with Angelman syndrome, helping us fund vital research and support for families. Thank you, Maxsea and Grace, for your amazing contribution and for inspiring us all! 💙

•Myth: Angelman syndrome is a form of Autism. •Fact: While Angelman syndrome and Autism share some overlapping traits, they are distinct genetic conditions. AS is caused by a missing or non-functioning gene on chromosome 15, whereas Autism has a broader and more varied genetic background.   •Myth: People with Angelman syndrome cannot communicate. •Fact: Though verbal communication can be limited, individuals with AS use other methods to express themselves, such as gestures, facial expressions, sign language, or communication devices.   •Myth: People with Angelman syndrome are always happy and smiling. •Fact: Although individuals with AS often display a happy demeanour, they experience a full range of emotions just like anyone else. Their smiles do not mean they don’t feel frustration, sadness, or pain.   •Myth: Angelman syndrome is inherited from parents. •Fact: In most cases, Angelman syndrome is not inherited. It typically occurs due to a random genetic mutation during conception. Only a small percentage of cases are inherited.   •Myth: Individuals with Angelman syndrome will never walk. •Fact: Many individuals with AS can walk, though they may experience delays or require assistance due to challenges with balance and coordination.   Help us Spread the Truth! 🎗️Raising awareness about Angelman syndrome is key to ensuring those affected receive the right support. By busting these myths, we can create a more informed and compassionate community.   ❓Have you encountered any misconceptions about Angelman syndrome? Please share your experiences in the comments and help us continue to debunk the myths!

🌟 Fundraising Spotlight🌟 We are thrilled to shine the spotlight on Michelle Corcoran, who, alongside her family and friends are gearing up for the 5k Great South run on 19th October to raise vital funds for FAST UK in support of finding a cure for Angelman syndrome. 🌟 Michelle’s inspiration comes from her wonderful daughter, Savannah McDonagh, who lives with Angelman Syndrome. Savannah brings so much joy to their family, and Michelle is deeply committed to raising awareness and funds to support groundbreaking research that brings us closer to a cure. 💙 The dedication Michelle and her family show in taking on this challenge is truly inspiring, and we couldn’t be prouder to support them. If you’re able to contribute, please support Michelle, Savannah, and their family here: https://lnkd.in/e4iRZJ7Q Together, we can make a difference! 💙✨ #FASTUK #AngelmanSyndrome #TogetherWeCan #FundraisingSpotlight #CureAngelman

Natural History Study- Angelman syndrome Thank you the most amazing team at Oxford University for leading the Study and working so hard to make this happen. A lot of work is still ahead to complete the Study but we would like to recognise all efforts from the scientists and our dedicated community. We know it’s not easy to travel with our children, performing an EEG, and having blood tests, so we really appreciate your commitment. “The results of this study will be key for the drug development process. I am so pleased recruitment is now complete! I know that this would have not been possible if it wasn’t for a great community and great families who are committed to the purpose!” Dora Markati, MD, MPhil STRONG | Department of Paediatrics | University of Oxford Just to remind everyone – the Natural History Study is the key project that FAST UK is funding at the moment. It costs £250k per year to run and it will take 4 years in total to complete it. So, it brings us to £1m overall cost. It’s hard to break down the costs as the scope of the study is quite complex but this will give you some idea: £2k covers an innovative ultra-sensitive wearable device for one patient enabling valuable data collection; and £10k allows one patient to participate in the Study and to line them up for future trials. That’s why we need your support with fundraising. Please get involved, pick your challenge and go! https://lnkd.in/eX9_pAQN

Warm Up Your Workplace with a Bake Sale for FAST UK! 🍰 As the colder weather rolls in, what better way to warm up than with a delicious bake sale to support FAST UK and raise awareness for Angelman syndrome? Organise a cozy bake sale at your workplace and invite your colleagues to whip up their favourite treats – from cakes and cookies to pies and pastries. Every bite helps us get closer to funding research for a cure! Here’s how you can get started: 1. Pick a Date: Choose a day when everyone can bring their baked goods to the office. 2. Bake and Share: Encourage everyone to contribute their favourite sweet or savoury treats. 3. Donate: Set a suggested donation amount per item, with all proceeds going directly to FAST UK. 4. Spread the Word: Use posters, emails, and social media to get your office excited about the event! Not only is this a great way to enjoy some delicious goodies, but it also brings your workplace together for an important cause. Every cake, cookie, or pie sold helps make a difference. So let’s get baking and help raise funds for Angelman syndrome research! Tag us in your baking creations – we’d love to see what you’ve been cooking up! 🍪🍰🧁🥧 #BakeForAngelman #FASTUK #FundraiseFriday #CureAngelman #AngelmanSyndrome