Volunteering (volunteering / Tubersclerosis Assistance) by THE TUBEROUS SCLEROSIS ASSOCIATION One Off onMon, Tue,Wed,Thu,Fri,Sat,Sun) at 8:00 AM /End Date: 31 Dec 2024 Surrey,KT17 1HQ Adults (18+)
Need volunteers for charity and helping people with TS disease
In the annals of healthcare advocacy, there are organizations that transcend the boundaries of their beginnings, evolving from modest roots into formidable pillars of support and progress. Among these, the Tuberous Sclerosis Association (TSA) stands as a sterling example. Established in 1977 with a meagre sum of £25 and a membership roster of just 50 families, the TSA embarked on a mission that would ultimately transform the landscape of Tuberous Sclerosis Complex (TSC) support in the UK. What began as a humble round-robin letter of solidarity has, over the years, blossomed into a dynamic, professional entity committed to bettering the lives of those impacted by this complex condition.
History of the TSA by Year
The TSA's legacy is punctuated by key milestones. From establishing UK representation for TSC-affected individuals to landmark research discoveries, each era in the TSA's history marks a step forward in the fight against TSC. In its 45th year, the Tuberous Sclerosis Association stands poised to continue its vital work, offering support, driving research, and championing awareness for those affected by the Tuberous Sclerosis Complex.
Vision and Mission of TSA
The TSA's mission is twofold: to provide immediate assistance while working towards a future free from TSC's grip. This dual-purpose approach underlines their dedication to the present well-being and future prospects of those affected. With a clear vision of conquering TSC and its effects, the TSA's strategic aims and objectives for 2019-2023 are boldly outlined. From impacting health and well-being to pioneering research, their goals resonate with a resounding call for progress.
About the study and Volunteering
The TSA's five-year strategy, spanning from 2019 to 2023, is a blueprint for progress. It aims to "REACH more people and drive more Research," ensuring sustained support and pioneering research to combat TSC. The TSA's commitment to accessibility shines through in its approach. By offering easily accessible information, fostering connections among affected individuals and their families, and enhancing professional expertise, they aim to revolutionize the understanding and management of TSC.
The TS2000 project, led by Dr. Charlotte Tye and her team at King's College London, is the first comprehensive study tracking the lifelong development and experiences of individuals with Tuberous Sclerosis Complex (TSC). Initiated in 2000, the study has followed participants who were initially aged 0-16 years, collecting extensive data on TSC-related epilepsy, intelligence, and mental health. This research aims to fill the gap in understanding how TSC evolves from childhood through adulthood. As Phase 4 of the study begins, the team is seeking new participants to contribute their insights, particularly on how a new app can monitor mental health and behavior symptoms in young adults with TSC.
Phase 4 of the TS2000 project focuses on addressing the mental health challenges faced by young adults with TSC. This phase aims to develop a new app designed to provide personalized and tailored treatment and support. To ensure the app meets the needs of its users, the research team is inviting young adults with TSC, aged 16-30, to share their views on the app’s features and functionalities. Participation in this phase is entirely online, allowing easy access for individuals regardless of their location. This innovative approach is expected to lead to significant advancements in the treatment and support for mental health challenges in young adults with TSC.
Company and Charity Information
With an inclusive, ambitious, and effective ethos, the TSA operates from its registered address in Epsom, Surrey. As a Company Limited by Guarantee and a Registered Charity in England and Scotland, their dedication to transparency and accountability is palpable. Donations, big or small, hold the power to change lives. From providing essential welcome packs to funding crucial research, each contribution is a step towards alleviating the burden of TSC.From its inception as a support letter exchange to its current status as a global authority on TSC, the TSA's journey is one of unwavering dedication. With roots firmly grounded in community and family, they look ahead to a future where TSC is no longer a threat. With a history etched in compassion and fueled by an unyielding commitment to progress, the TSA's legacy is one of tireless advocacy, pioneering research, and unwavering support. As they approach their 45th year, the TSA's significance in the realm of TSC advocacy has never been more pronounced. Their journey, which began with a handful of families seeking solace in shared experiences, has transformed into a worldwide movement poised to shape the future of TSC research, awareness, and support for decades to come. This is the story of an organization that dared to dream beyond limitations, proving that from modest beginnings, monumental change is possible.
For more information, we encourage you to visit their charity web site by clicking the link below.
Key Requirements:
Medical Volunteering
Call: 0300 222 5737
Email: admin@tuberous-sclerosis.org
According to the charity’s website, The Tuberous Sclerosis Association offers support to individuals and their families affected by Tuberous Sclerosis Complex (TSC) across the UK, assisting both patients and their caregivers.The ...Read More
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