AT Society

As it’s Trustees' Week we would like to take this opportunity to thank our Board of Trustees, who are very often our unsung heroes! They are all VOLUNTEERS who share ultimate responsibility for governing the charity and directing how it is managed and run. It’s a significant responsibility and during Trustees’ Week we want to acknowledge their contribution, passion, skill and commitment. Thank you, to you all, for all you do and the difference you make. https://lnkd.in/e6YEAQFN #trusteeweek #trustees #makingadifference #atsociety #AtaxiaTelangiectasia 

AT Society trustee and scientific adviser, Professor Penny Jeggo, has been invited to share her knowledge and expertise on neurodegeneration in AT at the Ataxia Telangiectasia Workshop in China this week. This is one of the most respected conferences in China. Here she is with joint conference organiser, Dr Peter McKinnon. We look forward to sharing key findings from the conference on Penny’s return. For more information on neurodegeneration in AT, visit our website: https://lnkd.in/eB-bqVuE #neurodegeneration #neurodegenerativedisease #ataxiatelangiectasia #dnadamageresponse #makingadifference

IntraBio Inc is very excited to confirm the U.S. Food and Drug Administration (FDA) has approved AQNEURSA (levacetylleucine) for the treatment of neurological manifestations of Niemann-Pick disease type C (NPC) in adults and paediatric patients weighing ≥15 kg. This is very good news for AT as it means that they are likely to progress their plans for a small Phase III clinical trial for adults and children with AT. We are liaising with IntraBio about this and will share more about it when we can. Please find IntraBio’s announcement regarding the FDA approval here: https://lnkd.in/eVjKx8JP

Hats off to May Yung Tiet, a Neurology Registrar pursuing a PhD in Ataxia Telangiectasia, for her remarkable achievement at the Equinox24 this weekend, where she ran an impressive 100km in just 24 hours! May shared "It was a tough race! Luckily I was sat in my tent sheltering when the heavy rain and thunderstorms hit and then had to drag myself outside to carry on running in the dark. I was determined to get through it to have the chance to fundraise for the AT society again. My PhD also finished this year so thank you for all of your support." Congratulations, May, and thank you for your incredible contributions to the AT Society over the years! #AtaxiaTelangiectasia #raredisease #smallcharities #research

We were pleased to hold an important scientific panel discussion recently on the basis underlying neurodegeneration in AT and how to exploit this for therapeutic benefit.   It was a stimulating and inciteful discussion with some of the very best AT minds in the world, sparking new ideas that participants will be able to pursue in their research into this complex condition.   Thank you to the speakers Sam Nayler, Peter McKinnon, Tanya Paull, Martin Lavin, Ernst Wolvertang, Svetlana Khoronenkova, Vincenzo Costanzo, Kim Chow and John Skidmore, and to Howard Lederman for chairing the meeting, and everyone who joined us. Your contributions into AT research continue to be exceptionally valuable.   For more information about AT research and how you can help visit: www.atsociety.org.uk   #strongertogether #neurodegeneration #raredisease #smallcharities #research  

Lee, his twin brother Deano, and a fantastic team from Adams Morey Ltd. took on a very challenging Tough Mudder event in Birmingham at the weekend. The team completed the 18km course, crossing the finish line together. They raised over £5,000 for the AT Society - we would like to say a huge thank you to Lee, the team and all who sponsored them! Go to the link to read Lee's story and to sponsor this amazing team https://lnkd.in/eVGuzffv

On 16th September Professor Jeggo, AT Society Trustee and scientific advisor, will lead a discussion with some of the world's leading ataxia telangiectasia scientists into the different causes of neurodegeneration in AT. Interested? Register here. https://lnkd.in/eriRxrrk Please note, it will be a scientific discussion at a clinical research level. We will make a layman’s summary available, for those from non-scientific backgrounds, after the event. 

After a brief summer break, the children’s national AT clinic in Nottingham resumed this week. Over the coming months, the support team will meet several new families at the clinic to provide support and guidance. The team will also offer virtual training sessions for local professionals and in-person home/school visits. To find out more about these specialist AT clinics, watch this short film: https://lnkd.in/eD8nXZYJ

We want to express our gratitude to communications consultancy Madano for their invaluable advice and expertise over the years. Thanks especially to Kelvin, Grace and Magda who recently spent a morning helping us to improve our social media skills.

We were delighted to meet with Victoria Collins, Liberal Democrat MP for Harpenden & Berkhamsted, last week. The challenges that small charities are facing right now, especially in terms of increasing beneficiary needs at a time when funding is decreasing, are considerable. We are so pleased to have the support of Victoria to help with the issues that matter and the realities facing our community. After the visit, Victoria commented, “It was a great privilege to meet the AT team, as the local MP, I will provide the AT Society with all the ongoing support I can. We should be very proud that Harpenden is home to such a remarkable organisation”. #charitysupport #livingwithdisability #makingadifference #Harpenden