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TSC & Sleep Research Project – Take Part!!

An exciting opportunity to take part in TSC specific research! Dr Stacey Bissell is an Assistant Professor in the School of Psychology, University of Birmingham. She has a specific research background in tuberous sclerosis complex and specialises in sleep-focused and behavioural research with children with TSC, but also conducts research that focuses on caregiver wellbeing and family lived experiences. She is leading this research project which is open to Irish TSC families. See further details below: Understanding caregiver experiences of sleep management difficulties inindividuals with tuberous sclerosis complexAims of the studyThe main aim of this study is to document current sleep management strategies employedby families and or paid care staff caring for children or adults with TSC with severe sleepdifficulties. We aim to describe caregiver experiences of poor sleep in TSC, in relation tosleep management strategies, access to services, and priorities for further action andsupport. Participants will first complete online questionnaires, a pre-interview screeningtelephone call (to determine eligibility), and an online Zoom interview (if eligibility isconfirmed).Who can take part in this research?Adult caregivers (paid or unpaid) aged 18 years and older caring for a child or adult withTSC who is currently experiencing severe sleep difficulties (within the past month).Caregivers must provide overnight care for the person they care for more than 50% of thetime within the primary home setting. Caregivers must be proficient in English fluency andcomprehension and must be the individual’s primary caregiver (e.g. parent, adoptive parent,adult sibling, legal guardian, paid care staff).Can multiple caregivers caring for the same individual with TSC participate?Yes – if there are multiple caregivers who each provide overnight care more than 50% of thetime (e.g. multiple family members in the same household) and you meet all other eligibilityrequirements, all caregivers can take part. Please note, each individual caregiver mustcomplete all components of the study independently (e.g. separate online questionnaires,separate pre-interview screening telephone calls, and separate online Zoom interviews).The person I care for lives in residential care, can paid care staff participate instead?Yes – ensuring you are the legal guardian and endorse their participation in the study, andthe paid caregiver meets the eligibility requirements and is willing to take part.How long will participation in the study take?There are two components to participation. 1) An online survey open to all caregivers(approximately 30 minutes duration) and 2) a Zoom interview with a member of our researchteam to discuss your own lived experiences of sleep management in TSC (approximately 45minutes duration). Participation in the Zoom interview is dependent on responses to a pre-interview screening telephone call (approximately 10 minutes). Click the link before to bring you to the research site page: https://bhampsychology.eu.qualtrics.com/jfe/form/SV_eX6vqnf2fLg0AJg

Rare Disease Day 2024

Read the inspiring story of our wonderful Mary Vasseghi and the superb research she is conducting on TSC in Ireland with Future Neuro. Mary is a key figure in our TSC Ireland committee and is doing exceptional work to improve the lives of everyone in Ireland living with TSC. Rare Disease Day 2024 – FutureNeuro (futureneurocentre.ie) Watch this video for more about Mary’s journey in the world of TSC research

Rare Disease Day 2024

We supported the Rare Diseases campaign that launched on Rare Disease Day (February 29th) in the Irish Independent and online at HealthNews.ie Rare Diseases looked at all things going on in the Rare Disease community from exciting treatment developments to advocating for change and recognition to shortening the diagnostic odyssey and featured insightful content from Rare Disease Ireland, EURORDIS, Rare Disease International, Science Foundation Ireland, Alexion, Alnylam Pharmaceuticals and more The full supplement is available to read here: https://www.healthnews.ie/rare-diseases/ The TSC Ireland article is available here: http://www.tinyurl.com/4erux44f

Tuberous Sclerosis Complex & Epilepsy Management Across the Lifespan

Insights From Paediatric & Adult Epilepsy Nurses We are delighted to welcome Claire Behan and Ann Connolly two Epilepsy Advanced Nurse Practitioners based in St James’s Hospital and Tallaght University Hospital respectively. Please join us on the night for what promises to be a very informative and interesting session on a topic that is relevant to so many living with TSC. If you would like to submit a question for the speakers in advance please email info@tscireland.org When: Tues 19th March, 7-8pm Where: Online via Zoom – click the link below to view a recording of the webinar

Family Fun Day 2024!!

Save the date! When: Saturday May 11th Where: Fota Wildlife Park, Co. Cork More details to follow here and on our FaceBook page. We would love to see as many families and individuals affected by TSC as possible in Cork! Great opportunity to meet others in the same boat and have a fun day out together…..

Sleep & TSC Webinar Part 3

Part 3: Strategies for Sleep You can access the 3rd part in our Sleep Webinar series below as Dr Stacey Bissell brings us some more useful insight into how sleep is affected in TSC and useful strategies particularly around medication, work and school.

TSC Ireland Family Fun Day 2023

The National Stud, Kildare We had a wonderful day out at the National Stud and Japanese Gardens in Kildare on 15th Oct. The sun shone on a beautiful crisp Oct day and definitely added to the experience! We enjoyed an interesting tour of the stud and grounds and had the chance to feed carrots to some of Irelands most famous racehorses! The playground was explored by the younger attendees. A delicious lunch was enjoyed by all in the restaurant followed by the option of trying out the new Racehorse Experience. The day was a lovely relaxed opportunity for those affected by TSC and their families to meet, chat and get to know each other. We look forward to many more Family Fun Day to comes!