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X-WR-CALNAME:The Tuberous Sclerosis Association
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X-WR-CALDESC:Events for The Tuberous Sclerosis Association
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DTSTART;TZID=Europe/London:20211118T190000
DTEND;TZID=Europe/London:20211118T200000
DTSTAMP:20261008T044940
CREATED:20211015T130557Z
LAST-MODIFIED:20211118T104049Z
UID:87372-1637262000-1637265600@tuberous-sclerosis.org
SUMMARY:TSA Annual General Meeting 2021
DESCRIPTION:The TSA’s Annual General Meeting (AGM) 2021 will take place Thursday 18 November\, 7pm – 8pm. The AGM will take place virtually\, via a video conferencing platform. The AGM is a great opportunity to hear from the TSA and to make sure that we understand what is most important to you. \nTo attend the AGM 2021\, please register your place below. Tickets will be available until 5pm on Thursday 18 November. \nTSA AGM 2021 materials can be read here: \n\nAGM 2021 Trustees letter\nAGM 2021 Notice\nA Year in Review: 2020 (including the latest Treasurer’s Report\, Strategic Report\, the 2020 Summarised Statement of Financial Activities and the Balance Sheet for 2020)
URL:https://tuberous-sclerosis.org/event/agm2021/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/jpeg:https://tuberous-sclerosis.org/wp-content/uploads/2020/03/tsa-slate.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211110T193000
DTEND;TZID=Europe/London:20211110T203000
DTSTAMP:20261008T044940
CREATED:20211019T100351Z
LAST-MODIFIED:20211019T100351Z
UID:87465-1636572600-1636576200@tuberous-sclerosis.org
SUMMARY:Virtual event: Introduction to supporting siblings
DESCRIPTION:Do you want to find out more about supporting siblings whose brothers or sisters live with TSC?\n\n \nThe TSA is delighted to host ‘Introduction to supporting siblings’\, a special virtual workshop organised in partnership with siblings charity\, Sibs. \nPresented by Sibs\, this workshop is intended for parents and guardians of children living with TSC who want to know more about supporting siblings. The focus of the workshop will be on supporting siblings. This workshop is not for professional workers. \nThe workshop will give parents and guardians an insight into siblings’ needs and experiences\, and gives some ideas for giving siblings attention \n‘Introduction to supporting siblings’ is free to register and attend. Unlike other TSA events\, this event is presented by Sibs\, with the TSA facilitating the opportunity for the workshop to be focused on the TSC community. \nAttendance is limited to only a very small number of attendees – do not delay registering\, to help guarantee your place. \nOnce registered\, you will receive details through email on how to join the session\, within 24 hours of the event taking place. \nMore information on TSC and skin can be found here.
URL:https://tuberous-sclerosis.org/event/supporting-sibs/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/10/sibsslate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211027T180000
DTEND;TZID=Europe/London:20211027T190000
DTSTAMP:20261008T044940
CREATED:20210928T110722Z
LAST-MODIFIED:20210928T111332Z
UID:87104-1635357600-1635361200@tuberous-sclerosis.org
SUMMARY:Virtual event: TSC and its impact on skin
DESCRIPTION:Virtual event: TSC and its impact on Skin\n \nIn this virtual event\, we welcome Dr Lea Solman (Consultant in Paediatric Dermatology\, Great Ormond Street Hospital) to discuss all-things skin-related in the world of TSC. \nSkin and dermatology issues are some of the most significant factors of living with TSC\, with around nine in every 10 people who live with TSC also experiencing skin problems as a result of the condition. Dr Solman will cover the key areas of TSC and skin\, including the most common ways that TSC affects the skin\, and treatment and management of TSC skin issues. The session will include opportunities to also ask Dr Solman questions in a Q&A portion of the event. \n‘TSC and its impact on skin’ is free to register and attend. Once registered\, you will receive details through email on how to join the session\, within 24 hours of the event taking place. \nMore information on TSC and skin can be found here.
URL:https://tuberous-sclerosis.org/event/tsc-and-skin/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/09/skinslate4.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210602T180000
DTEND;TZID=Europe/London:20210602T190000
DTSTAMP:20261008T044940
CREATED:20210519T100304Z
LAST-MODIFIED:20210519T100304Z
UID:85928-1622656800-1622660400@tuberous-sclerosis.org
SUMMARY:Virtual event: The importance of sleep in children with TSC
DESCRIPTION:Do you want to know about the impact of sleep on wellbeing\, behaviour and managing TSC in children living with the condition?\n \nJoin us for this live session\, where sleep experts Dr Stacey Bissell (Research Fellow\, University of Birmingham)\, Dr Caroline Richards (Senior Lecturer\, University of Birmingham) and Dr Catherine Hill (Associate Professor\, University of Southampton) will discuss how sleep impacts on the daily lives of children affected by TSC. \nDuring the event\, we will cover: \n\nSleep studies in TSC (eSNORE)\nHow sleep can affect wellbeing\, behaviour and managing TSC\nA Q&A session to ask your important questions about sleep to the experts\n\nThis is the first TSA virtual session focused specifically on TSC and sleep – don’t miss it!
URL:https://tuberous-sclerosis.org/event/virtual-event-importance-sleep-children/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/05/sleep-thumbnail.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210520T180000
DTEND;TZID=Europe/London:20210520T190000
DTSTAMP:20261008T044940
CREATED:20210429T123503Z
LAST-MODIFIED:20210429T123713Z
UID:85797-1621533600-1621537200@tuberous-sclerosis.org
SUMMARY:Virtual event: A values-based approach to improving mental health (ACT) in TSC
DESCRIPTION:TSC and mental health: A values-based approach to improving mental health (ACT)\n \nIn the webinar\, Dr Jennifer Black (Clinical Psychologist\, Bristol Royal Hospital for Children) will introduce skills that allow you to deal with difficult thoughts and feelings\, so they have less of an influence over you. \nLiving with a long-term physical health condition can have a significant impact on emotional wellbeing and quality of life. This webinar will focus on how people living with TSC can be supported to live well alongside ongoing health problems. It will focus on Acceptance and Commitment Therapy (ACT)\, a type of talking therapy that encourages openness to and awareness of the present moment in order to help people maintain behaviours consistent with their life goals. \nACT fosters engagement with\, rather than avoidance of\, painful experiences to move towards acceptance of unchangeable difficulties alongside building a rich and meaningful life despite the presence of ongoing difficulties.
URL:https://tuberous-sclerosis.org/event/values-based-approach-to-improving-mental-health/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/04/Dr-Black-webinar-slate-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210417T133000
DTEND;TZID=Europe/London:20210417T160000
DTSTAMP:20261008T044940
CREATED:20210107T112646Z
LAST-MODIFIED:20210414T110027Z
UID:54602-1618666200-1618675200@tuberous-sclerosis.org
SUMMARY:Outlook 2021 virtual meeting
DESCRIPTION:Are you an adult mildly affected by TSC? Join us for the Outlook 2021 virtual event on 17 April and get to know others in the TSC community!\n \nAll adults mildly affected by TSC will receive a warm welcome at Outlook\, no matter where you are from in the UK or whether it is your first time at Outlook or you come every year. \nThere’ll be opportunities to: \n\nConnect with others who understand the impact that TSC can have\nTake part or watch interesting sessions about living with TSC\nLearn more about the work of the TSA\n\nLockdowns and social distancing won’t stop the Outlook community from coming together – Outlook 2021 will take place via Zoom. \nRegistration will be open until 12pm Saturday 17 April. \nPlease find our agenda for Outlook 2021 below. \nOutlook 2021 virtual meeting agenda\n\n1:30pm – 1:35pm: Welcome\, introductions and housekeeping\n1:35pm – 1:50pm: TSA update\n1:50pm – 3:00pm: Your life a year on with covid-19: Transforming yourself and your outlook (with Positive Psychologist Andrew Parsons\, Reciprocal Minds\n3:00pm – 3:15pm: Break\n3:15pm – 3:55pm: Living with TSC: Looking forward to 2021 and beyond\n3:55pm – 4pm: Thank you and stay safe
URL:https://tuberous-sclerosis.org/event/outlook2021/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/01/Outlook-logo-2021.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210413T180000
DTEND;TZID=Europe/London:20210413T190000
DTSTAMP:20261008T044940
CREATED:20210323T115634Z
LAST-MODIFIED:20210401T101516Z
UID:85523-1618336800-1618340400@tuberous-sclerosis.org
SUMMARY:Covid-19 and children with TSC: Q&A special
DESCRIPTION:Many families in the TSC community have questions about next steps for themselves and their children who live with TSC\, as we work through the covid-19 pandemic. Here\, we hope to shed light on all-things related covid-19 and children who live with TSC.\nJoin us on Tuesday 13 April\, as Dr Jill Cadwgan (Consultant in Paediatric Neurodisability\, Evelina Children’s Hospital) discusses and answers the most important questions to you about children affected by TSC in relation to covid-19\, including: \n\n“Why are children not being routinely vaccinated?”\n“What about children who are ‘clinically extremely vulnerable’ to covid-19?”\n“Should we continue to shield?”\n\nRegister for the event by clicking below. Registration will be open until 4pm Tuesday 13 April.
URL:https://tuberous-sclerosis.org/event/covid19-children-qa/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/03/Tanjala-webinar-slate2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210313T130000
DTEND;TZID=Europe/London:20210313T150000
DTSTAMP:20261008T044940
CREATED:20210208T111658Z
LAST-MODIFIED:20210301T113651Z
UID:81334-1615640400-1615647600@tuberous-sclerosis.org
SUMMARY:Northern Ireland Get Together 2021
DESCRIPTION:We welcome in the TSC community who live in Northern Ireland to the virtual Northern Ireland Get Together 2021\nThe Northern Ireland Get Together 2021\, taking place on Saturday 13 March 1pm – 3pm\, is an opportunity to connect with others in the TSC community who understand the challenges of living in Northern Ireland and being affected by TSC. \nCome along to hear from the TSA team\, meet your fellow Northern Ireland TSC community and to discuss topics important to you. The event will also feature a special Q&A session with the Belfast TSC Clinic. \nJoin the meeting through Zoom to: \n\nHear about the work of the TSC Belfast Clinic\nMeet your fellow TSC community members in Northern Ireland\nCatch-up on the work of the TSA\n\nRegistration\, open until 11am Saturday 13 March\, is free – so\, register today!
URL:https://tuberous-sclerosis.org/event/ni-get-together-21/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/02/Northern-Ireland-Get-Together-logo-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210308T180000
DTEND;TZID=Europe/London:20210308T190000
DTSTAMP:20261008T044940
CREATED:20210106T163510Z
LAST-MODIFIED:20210118T125131Z
UID:54431-1615226400-1615230000@tuberous-sclerosis.org
SUMMARY:Epidiolex (cannabidiol) and TSC
DESCRIPTION:There has been a lot of interest in the possibility of Epidiolex (cannabidiol) as a treatment option for TSC-related epilepsy. In this virtual session\, we look at the topic more closely.\nJoin us for this virtual session\, where we are delighted to welcome Dr Sam Amin (Consultant Paediatric Neurologist\, University of Bristol) to discuss Epidiolex (cannabidiol)\, TSC and the potential treatment’s journey so far. \nAs part of the event\, Dr Amin will be pleased to answer questions from the community regarding Epidiolex. \nRegistration will be open until 4pm Monday 8 March.
URL:https://tuberous-sclerosis.org/event/epidiolex-cannabidiol-and-tsc/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/01/epidiolexslate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210218T180000
DTEND;TZID=Europe/London:20210218T190000
DTSTAMP:20261008T044940
CREATED:20210121T143600Z
LAST-MODIFIED:20210223T140650Z
UID:63660-1613671200-1613674800@tuberous-sclerosis.org
SUMMARY:In Conversation with Sir David Suchet CBE
DESCRIPTION:This event has now passed. However\, you can still watch ‘In Conversation with Sir David Suchet CBE‘ by purchasing access to the recording of the event (click here). Everyone at the TSA would like to thank Sir David for taking part in this fantastic fundraising event. \nThe TSA is delighted to welcome the TSC community and beyond to join us for ‘In Conversation with Sir David Suchet CBE’ via Zoom. This is a unique opportunity to hear from one of Britain’s best-loved performers and ask the questions you’ve always longed to ask him.  \n\nAt this very special virtual fundraising event\, Sir David will discuss his incredible career across stage\, television and film\, as well as his passions and interests away from performing. You can send us your questions for Sir David\, and we’ll ask as many as we can fit into the hour! \nWhether bringing to life the iconic Hercule Poirot\, portraying an expansive list of Shakespearean characters or even lending his voice in the recent BBC production of His Dark Materials\, Sir David Suchet CBE’s award-winning work has led him to be one of Britain’s most celebrated actors. \n‘In Conversation with Sir David Suchet CBE’ will take place through Zoom on Thursday 18 February\, with details shared to registered attendees before the event. Don’t miss out on this unique opportunity to hear from Sir David\, as he talks directly with the TSA. \nStandard tickets for this virtual event are priced at £25 to raise funds for the Tuberous Sclerosis Association. \nExpanded access tickets for the event are priced at £10 for members of the TSC community in the UK who receive benefits or whose income has been affected by coronavirus\, to make sure that everyone can come together for this exciting fundraising event. \nAttendees who can afford to do so are encouraged to give an additional donation to the charity when booking their ticket to help the TSA continue its vital work to improve the lives of people living with TSC and their families. \nTickets are available via Eventbrite until 4pm 18 February: https://www.eventbrite.co.uk/e/in-conversation-with-sir-david-suchet-cbe-tickets-140974497517 \nThose who previously registered for this event through our website’s booking form are still registered and will receive information about accessing the event as usual.
URL:https://tuberous-sclerosis.org/event/conv-with-sir-david/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/01/In-conversation-with-Sir-David-Suchet-slate-jan21.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210210T180000
DTEND;TZID=Europe/London:20210210T190000
DTSTAMP:20261008T044940
CREATED:20210106T153011Z
LAST-MODIFIED:20210126T164558Z
UID:54368-1612980000-1612983600@tuberous-sclerosis.org
SUMMARY:Covid-19 vaccines and TSC: Q&A with experts
DESCRIPTION:With covid-19 vaccines being rolled out across the UK\, we know that many people in the TSC community will have questions about their suitability and use in people living with TSC\nThe TSA is pleased to welcome Dr Frances Elmslie (Consultant Geneticist\, St George’s University Hospital and TSA Trustee) and Prof Julian Sampson (Professor of Medical Genetics\, Cardiff University) to a special Q&A session focused on covid-19 vaccines and TSC. \nDuring the event\, we will explore questions such as: \n\nWhen might people living with TSC receive the vaccine?\nIs the vaccine safe for the TSC community?\nHow can I keep up-to-date with vaccine information?\n\nRegistration will be open until 4pm 10 February.
URL:https://tuberous-sclerosis.org/event/covid-19-vaccines-and-tsc-qa-with-experts/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2021/01/covid-19-vaccines-qa-slate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210113T180000
DTEND;TZID=Europe/London:20210113T190000
DTSTAMP:20261008T044940
CREATED:20201203T120407Z
LAST-MODIFIED:20201203T120407Z
UID:42639-1610560800-1610564400@tuberous-sclerosis.org
SUMMARY:Women's health\, menopause and TSC: Virtual session
DESCRIPTION:Do you\, or someone close to you\, live with TSC and have questions around women’s health\, including menopause?\nDepending on how TSC affects you\, the condition may impact on the way you experience menopause or other women’s health issues. \nThe TSA is delighted to welcome Debra Holloway (Gynaecology Nurse Consultant\, Guy’s and St. Thomas’ NHS Foundation) to a closed event focused on questions and more information on women’s health and menopause whilst living with TSC. \nThe TSA understands that this is the first event of its type to be hosted exclusively for the TSC community. \nWe welcome all women to this event for an inclusive\, understanding and warm environment. Participants in the event will not be recorded\, with the meeting also hosted and led by female members of the TSA team. \nRegistration will be open until 4pm 13 January.
URL:https://tuberous-sclerosis.org/event/womens-health-tsc/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/12/womenshealthslate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201211T183000
DTEND;TZID=Europe/London:20201211T193000
DTSTAMP:20261008T044940
CREATED:20201201T145114Z
LAST-MODIFIED:20201201T145618Z
UID:41681-1607711400-1607715000@tuberous-sclerosis.org
SUMMARY:Christmas 'Book at bedtime' with Sir David Suchet CBE
DESCRIPTION:Start your preparation for Christmas with a magical reading of ‘The Night Before Christmas’\n \nGather around\, put on your Christmas jumper or PJs and get comfy. We have a very special festive treat for all of you\, as world-renowned actor Sir David Suchet CBE reads the traditional poem ‘The Night Before Christmas’ for the TSC community! \nFamilies\, individuals\, little ones and grandchildren alike – this gift is for everyone\, and gives us all the chance to come together virtually in the festive spirit\, as Sir David’s reading is premiered. We’ll also try to squeeze in time to sing a couple of festive favourites before saying ‘Goodnight\, sleep tight!’ and ‘only 14 sleeps until Christmas!’ \nWe’ll also have time for some singalong Christmas carols\, to get you into the festive mood. \nTickets are free and will be available until 4pm on Friday 11 December.
URL:https://tuberous-sclerosis.org/event/nightbeforexmas/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/12/suchet3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201205T130000
DTEND;TZID=Europe/London:20201205T153000
DTSTAMP:20261008T044940
CREATED:20201030T112129Z
LAST-MODIFIED:20201030T112129Z
UID:28980-1607173200-1607182200@tuberous-sclerosis.org
SUMMARY:Virtual Outlook Festive Special
DESCRIPTION:Grab a minced pie\, a cracker and your winter jumper – Outlook is looking festive!\nWith the TSC community facing a festive season when it will be difficult to meet with loved ones\, the TSA is delighted to organise a festive edition of Outlook\, the TSA group for adults mildly affected by TSC. \nWhether you’ve been to Outlook before or if it’s your first time\, come along to meet with others virtually through Zoom on Saturday 5 December\, 1pm – 3:30pm for some festive cheer and to connect with others in the TSC community. \nThe fantastic agenda for our festive Outlook special: \n\n1pm – 1:05pm\, Welcome and introductions\n1:05pm – 1:20pm\, Update from the TSA\n1:20pm – 2pm\, Christmas quiz\n2pm – 2:10pm\, Break\n2:10pm – 3pm\, Group discussion: Keeping connected and safe over winter\n3pm – 3:15pm: Christmas carols\n3:15pm – 3:30pm: Thank yous\, jumper competition\, close\n\nRegister below for this free session (registration open until 11am Saturday 5 December). \nThe TSA would like to say a big thank you to the Outlook Steering Group for all of their help in organising the event – without them it would not be possible.
URL:https://tuberous-sclerosis.org/event/virtual-outlook-festive-special/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/10/Outlook-christmas.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201126T180000
DTEND;TZID=Europe/London:20201126T190000
DTSTAMP:20261008T044940
CREATED:20201028T104442Z
LAST-MODIFIED:20201102T160606Z
UID:28368-1606413600-1606417200@tuberous-sclerosis.org
SUMMARY:TSA Annual General Meeting 2020
DESCRIPTION:The TSA’s Annual General Meeting (AGM) 2020 will take place Thursday 26 November\, 6pm – 7pm. The AGM will take place virtually this year to keep everyone safe and well. The AGM is a great opportunity to hear from the TSA and to make sure that we understand what is most important to you. \nTo attend the AGM 2020\, please register your place below. Tickets will be available until 4pm on Thursday 26 November. \nTSA AGM 2020 materials can be read here: \n\nAGM 2020 Trustees letter\nAGM 2020 Notice\nImpact Report 2019 (including the latest Treasurer’s Report\, Strategic Report\, the 2019 Summarised Statement of Financial Activities and the Balance Sheet for 2019)
URL:https://tuberous-sclerosis.org/event/agm2020/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/jpeg:https://tuberous-sclerosis.org/wp-content/uploads/2020/03/tsa-slate.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201125T180000
DTEND;TZID=Europe/London:20201125T190000
DTSTAMP:20261008T044940
CREATED:20201103T143015Z
LAST-MODIFIED:20201125T155833Z
UID:30629-1606327200-1606330800@tuberous-sclerosis.org
SUMMARY:Latest TSC research update: COVID-19\, LAM\, renal and TAND
DESCRIPTION:Are you interested in finding out about the latest discoveries in TSC research?\nThe TSA and St George’s University Hospitals are proud to be hosting ‘Latest TSC research update: COVID-19\, LAM\, renal and TAND‘ on 25 November. Chaired by Dr Frances Elmslie (Consultant Clinical Geneticist\, St George’s University Hospitals and TSA Trustee)\, the event will see Professor Julian Sampson (Professor of Medical Genetics\, Cardiff University) unpick the latest research and discoveries of TSC\, explaining what the findings could mean for the TSC community’s day-to-day lives. \nJoin the free event to find more about things such as TSC in relation to: \n\nCOVID-19\nLymphangioleiomyomatosis (LAM).\nKidney/renal function\nTSC-Associated Neuropsychiatric Disorders (TAND)\n\nTickets (free to all) will be available until 4pm on 25 November.
URL:https://tuberous-sclerosis.org/event/research-update-nov20/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/11/researchnov20-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200912T130000
DTEND;TZID=Europe/London:20200912T153000
DTSTAMP:20261008T044940
CREATED:20200902T093442Z
LAST-MODIFIED:20200902T094000Z
UID:22501-1599915600-1599924600@tuberous-sclerosis.org
SUMMARY:Northern Ireland Get Together Virtual Meeting 2020
DESCRIPTION:Sign up below for your free tickets to the first ever virtual Northern Ireland Get Together!\nThis year’s Northern Ireland Get Together is going virtual! Join us on Saturday 12 September 1pm – 3pm via web conferencing platform Zoom for a session focused exclusively on being affected by TSC and living in Northern Ireland. \nWhat you can expect at the Northern Ireland Get Together 2020 \n\nIssues important to those living in Northern Ireland and affected by TSC\nA look at the impact that covid-19 has had on TSC-affected families in Northern Ireland\nOpportunities to speak to the Belfast TSC Clinic about what matters to you\nThe chance to get to know your fellow Northern Ireland community\n\nRegister for the event below and get ready for a great day. Tickets will be available until 11am Saturday 12 September.
URL:https://tuberous-sclerosis.org/event/northern-ireland-get-together-2020/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/09/PSNI_Map_Northern_Ireland3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200729T180000
DTEND;TZID=Europe/London:20200729T190000
DTSTAMP:20261008T044940
CREATED:20200720T144730Z
LAST-MODIFIED:20200720T150122Z
UID:22154-1596045600-1596049200@tuberous-sclerosis.org
SUMMARY:Virtual session: Young people\, epilepsy and the 'new normal'
DESCRIPTION:Are you a parent\, carer or guardian of a young person who lives with TSC-related epilepsy?\nJoin the TSA’s virtual session ‘Epilepsy\, young people and the ‘new normal” on Wednesday 29 July at 6pm\, where we are delighted to be welcoming Lisa O’Brien (Head of Health\, Young Epilepsy) to discuss epilepsy-related key issues for young people as lockdown and shielding begin to ease. \nTopics to be covered include: \n\nAccessing medicine and clinical support as we transition to the ‘new normal’\nHow stress can impact on seizures and how it might be possible to help manage this\nKey issues and strategies for young people living with epilepsy as we enter the ‘new normal’\nA refresher on ‘Key things to remember’ about being out and about and living with epilepsy\n\nTickets will be available until 4pm on 29 July.
URL:https://tuberous-sclerosis.org/event/epilepsy-transition/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/07/ye5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200725T130000
DTEND;TZID=Europe/London:20200725T153000
DTSTAMP:20261008T044940
CREATED:20200703T135111Z
LAST-MODIFIED:20200722T102329Z
UID:22001-1595682000-1595691000@tuberous-sclerosis.org
SUMMARY:Scottish Get Together virtual meeting 2020
DESCRIPTION:Sign up below for your free tickets to the first ever virtual Scottish Get Together!\nDespite the coronavirus outbreak\, we’re determined to make sure that the TSC community can come together. That’s why this year’s Scottish Get Together will be virtual! \nJoin us on Saturday 25 July via web conferencing platform Zoom for a session focused exclusively on being affected by TSC and living in Scotland. \nScottish Get Together 2020 agenda\n* 13:00 – 13:10. Welcome and introductions\, housekeeping\n* 13:10 – 13:45. An overview of the TSA Support Line\n* 13:45 – 13:50. Break\n* 13:50 – 14:45. Q&A with Dr Shelagh Joss (Glasgow TSC Clinic)\n* 14:45 – 14:50. Break\n* 14:50 – 15:20. Scottish Association for Mental Health – Let’s Talk project\n* 15:20 – 15:30. Thank you and close \nOur thanks go to the Bank of Scotland Foundation\, for kindly providing a grant towards this event.
URL:https://tuberous-sclerosis.org/event/scottish-get-together-virtual-meeting-2020/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/07/sgt1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200715T180000
DTEND;TZID=Europe/London:20200728T190000
DTSTAMP:20261008T044940
CREATED:20200707T085649Z
LAST-MODIFIED:20200727T131229Z
UID:22011-1594836000-1595962800@tuberous-sclerosis.org
SUMMARY:Virtual session: Strategies for better sleep
DESCRIPTION:Are you or your family struggling to get a good night’s sleep?\nFor the TSC community\, many of us find it hard to have regular and restful sleep. With everything happening in the world\, this is now harder than ever. Register today for our ‘Strategies for better sleep’ virtual session to find out more about: \n\nThe importance of sleep\nWhy and how sleep can be disturbed in stressful environments\nPractical guidance on getting a good night’s sleep\n\nThe TSA is delighted to be welcoming Kerry Davies to the session – a certified sleep practitioner and learning disabilities nurse\, who has experience of roles within mental health\, hospital settings\, schools and with families of children with SEN\, providing her with extensive knowledge on how to help almost any family.
URL:https://tuberous-sclerosis.org/event/better-sleep/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/07/better-sleep-slate-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200624T180000
DTEND;TZID=Europe/London:20200624T190000
DTSTAMP:20261008T044940
CREATED:20200615T093348Z
LAST-MODIFIED:20200615T094438Z
UID:21754-1593021600-1593025200@tuberous-sclerosis.org
SUMMARY:Virtual session: Managing aggression and violent behaviours
DESCRIPTION:Would you like to learn more about managing aggression and violent behaviours in TSC?\nRegister today for our aggression and violent behaviours virtual session\, in which we will cover topics including: \n\nTriggers for aggressive behaviour and how to help predict them\nStrategies to help the transition back to the ‘new normal’ following lockdown measures\nCommon changes in a child’s behaviour as they grow up\n\nThe TSA is delighted to be welcoming Dr Tanjala Gipson (TAND Clinic Director\, Le Bonheur Children’s Hospital) to the session – a world leader on TAND and behaviour management in TSC.
URL:https://tuberous-sclerosis.org/event/managebehaviours/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/06/Tanjala-slate-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200606T130000
DTEND;TZID=Europe/London:20200606T153000
DTSTAMP:20261008T044940
CREATED:20200513T153539Z
LAST-MODIFIED:20200520T152150Z
UID:21458-1591448400-1591457400@tuberous-sclerosis.org
SUMMARY:Welsh Info Day virtual meeting 2020
DESCRIPTION:Sign up below for your free tickets to the first ever virtual Welsh Info Day!\nDespite the coronavirus outbreak\, we’re determined to make sure that the TSC community can come together. That’s why this year’s Welsh Info Day will be virtual! Join us on Saturday 6 June via web conferencing platform Zoom for a session focused exclusively on being affected by TSC and living in Wales. \nFurther details on speakers and an agenda will be shared as soon as possible.
URL:https://tuberous-sclerosis.org/event/welsh-info-day-virtual-2020/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/05/WIDslate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200527T180000
DTEND;TZID=Europe/London:20200527T190000
DTSTAMP:20261008T044940
CREATED:20200513T145925Z
LAST-MODIFIED:20200526T114024Z
UID:21449-1590602400-1590606000@tuberous-sclerosis.org
SUMMARY:Virtual session: Managing anxiety and stress (with Anxiety UK)
DESCRIPTION:Do you want to know how to manage anxiety during the covid-19 pandemic? \nSign-up below for the free virtual session ‘TSC\, anxiety and covid-19’\, where the TSA and Anxiety UK will discuss living well during the coronavirus pandemic and coping strategies for anxiety and anxiety-related depression. \nThe session is for everyone in the TSC community\, including those living with the condition and family members/loved ones and TSC professionals. \nFor over 50 years\, Anxiety UK has worked to relieve and support those living with anxiety and anxiety-based depression by providing information\, support and understanding via an extensive range of services\, including one-to-one therapy.
URL:https://tuberous-sclerosis.org/event/anxietycovid19/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/05/anxiety-uk-slate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200520T180000
DTEND;TZID=Europe/London:20200520T190000
DTSTAMP:20261008T044940
CREATED:20200513T122643Z
LAST-MODIFIED:20200513T154707Z
UID:21440-1589997600-1590001200@tuberous-sclerosis.org
SUMMARY:Virtual session: TSC carer support and covid-19 (with Carers UK)
DESCRIPTION:Are you\, or is someone that you know\, caring for someone living with TSC? \nSign-up below for the free virtual session ‘TSC carer support and covid-19’. The TSA are delighted to be hosting the session alongside Carers UK\, the UK’s only national membership charity for carers. \nDuring the session\, we will discuss a range of topics including: \n\nCarers fatigue and how to ask for help\nAllowing carers into the home during lockdown\nKeeping in touch with loved ones in their residential or care home\nLooking after yourself\, as well as others\, during covid-19\nAccessing respite and other support\n\nDon’t miss out on this fantastic opportunity hear from one of the most prominent organisations for carers in the UK.
URL:https://tuberous-sclerosis.org/event/carersupport-covid19/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/05/carers-uk-webinar-slate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200515T180000
DTEND;TZID=Europe/London:20200515T190000
DTSTAMP:20261008T044940
CREATED:20200511T173400Z
LAST-MODIFIED:20200515T115259Z
UID:21384-1589565600-1589569200@tuberous-sclerosis.org
SUMMARY:Virtual session: TAND and covid-19
DESCRIPTION:Do you or does someone close to you live with a TSC-Associated Neuropsychiatric Disorder (TAND)? \nSign-up now for the free ‘TAND and covid-19’ virtual session below. The special session will be  hosted by TAND experts Professor Petrus de Vries (Professor of Child & Adolescent Psychiatry) and Professor Anna Jansen (Head of Child Neurology\, UZ Brussels). \nDuring the session\, we will discuss: \n\nTAND at the time of covid-19\nCoping with challenging behaviours\nThe upcoming research project\, The TANDem Project\n\nThe event is proudly taking place on Global TSC Awareness Day.
URL:https://tuberous-sclerosis.org/event/virtual-session-tand-and-covid-19/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/png:https://tuberous-sclerosis.org/wp-content/uploads/2020/05/TAND-webinar-slate.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200418T130000
DTEND;TZID=Europe/London:20200418T153000
DTSTAMP:20261008T044940
CREATED:20200408T091233Z
LAST-MODIFIED:20200408T091233Z
UID:21184-1587214800-1587223800@tuberous-sclerosis.org
SUMMARY:Join us at the Outlook virtual meeting on 18 April
DESCRIPTION:Sign-up now for free tickets to the Outlook virtual meeting\, taking place via web conferencing on Saturday 18 April 2020! \nAre you an adult mildly affected by TSC? Join us to make new friends\, share experiences about living with TSC\, and enjoy unique workshops. \nTickets are available for adults aged 18+ who are mildly affected by TSC. \nInformation on how to join the Outlook virtual meeting will be provided to you after registering for the event. Any questions should go to comms@tuberous-sclerosis.org. \nMore information about the Outlook virtual meeting is available here.
URL:https://tuberous-sclerosis.org/event/virtual-outlook/
CATEGORIES:Community Event,Outlook
ATTACH;FMTTYPE=image/jpeg:https://tuberous-sclerosis.org/wp-content/uploads/2019/12/Outlook-2019-2-e1581522154314.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200314
DTEND;VALUE=DATE:20200315
DTSTAMP:20261008T044940
CREATED:20200129T170020Z
LAST-MODIFIED:20200213T080856Z
UID:18035-1584144000-1584230399@tuberous-sclerosis.org
SUMMARY:Family Fun Day Portsmouth - Tickets now on sale!
DESCRIPTION:. \nPurchase tickets below for the TSA Family Fun Day at Blue Reef Aquarium Portsmouth on Saturday 14 March 2020! \nSubsidised tickets purchased through the TSA will be ordered by the charity through Blue Reef Aquarium. Your tickets will be available from the aquarium on the day of the event. \nTickets are limited to x2 adult and x2 child tickets per family\, so that as many families as possible can have the opportunity to come along. Families requiring more tickets can contact Blue Reef Aquarium to purchase standard tickets. \nMore information about the day is available here.
URL:https://tuberous-sclerosis.org/event/family-fun-day-march-2020/
LOCATION:Blue Reef Aquarium Portsmouth\, United Kingdom
CATEGORIES:Community Event,Family Fun Day
ATTACH;FMTTYPE=image/jpeg:https://tuberous-sclerosis.org/wp-content/uploads/2020/01/FFD-2020-blue-reef-7.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190928
DTEND;VALUE=DATE:20190929
DTSTAMP:20261008T044940
CREATED:20191003T180214Z
LAST-MODIFIED:20191024T163623Z
UID:8946-1569628800-1569715199@tuberous-sclerosis.org
SUMMARY:Welsh Info Day 2019
DESCRIPTION:Welsh Info Day 2020\nDo you live in Wales and are affected by Tuberous Sclerosis Complex (TSC)?\nCome along to the Welsh Info Day\, our annual flagship event especially for the TSC community in Wales! \nEvery year\, at the Welsh Info Day you can: \n\nMeet and get to know your fellow TSC community in Wales\, including individuals and families affected by the condition\nTalk with the TSA about our upcoming plans and projects\, with a Welsh focus\nHear external Wales organisations talk about how they might be able to help you and your family\n\nPrevious events have included talks and workshops by: \n\nWales Gene Park / Genetic Alliance UK\nMencap Cymru\nCardiff TSC Clinic\n\nThe Welsh Info Day typically takes place early Autumn\, with a date and further information about the Welsh Info Day 2020 expected by Spring 2020. \nWould you like to be involved in organising the Welsh Info Day\, or have some ideas on how it could be improved?\nWe would love to have you involved! Contact us to ask about helping us to organise and manage the day. \nRelated pages\nOutlook 2020\n\nBig Day\n\nFamily Fun Day\n\nScottish Get Together\n\n• Northern Ireland Info Day
URL:https://tuberous-sclerosis.org/event/welsh-info-day-2020/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/jpeg:https://tuberous-sclerosis.org/wp-content/uploads/2019/08/wales-flag.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190831
DTEND;VALUE=DATE:20190908
DTSTAMP:20261008T044940
CREATED:20191003T180937Z
LAST-MODIFIED:20191024T164806Z
UID:8949-1567209600-1567900799@tuberous-sclerosis.org
SUMMARY:Scottish Get Together 2019
DESCRIPTION:Scottish Get Together 2020\nDo you live in Scotland and are affected by Tuberous Sclerosis Complex (TSC)?\n The Scottish Get Together is for you! \nThe Scottish Get Together is an opportunity for Scotland-based members of the TSC community – including people living with the condition\, their family and carers – to: \n\nMeet and get to know people living in TSC who also live in Scotland\nTalk with the TSA about projects and plans\, all with a Scotland-focus\nHear external Scotland organisations and charities about how they might be able to help you and your family with a range of services\n\nPrevious speakers at the Scottish Get Together 2019 have included: \n\nCerebra\nContact\nEpilepsy Scotland\nFamily Fund\nScottish Association for Mental Health\n\nThe Scottish Get Together typically takes place late Summer\, with a date and further information about the Scottish Get Together 2020 expected by Spring 2020. \nWould you like to be involved in organising the Scottish Get Together\, or have some ideas on how it could be improved? We would love to have you involved! Contact us to ask about helping us to organise and manage the day.
URL:https://tuberous-sclerosis.org/event/scottish-get-together/
CATEGORIES:Community Event
ATTACH;FMTTYPE=image/jpeg:https://tuberous-sclerosis.org/wp-content/uploads/2019/10/SGT.jpg
END:VEVENT
END:VCALENDAR