Marie James 🏴󠁧󠁢󠁷󠁬󠁳󠁿

Grateful to all involved in the Research Community for their dedication to Tuberous Sclerosis #Research. Enabling families like mine to have improved life enhancing & life saving treatments. Research gives us hope for a #TSCure for those yet to be born with #TSC #RDD2022 @UKTSA

Worth listening to this clip of @Tanni_GT We should not be passing any bills where the detail isn't sound. A Bill of this importance? Literally about life and death? I am grateful of the lord's doing their job of scrutiny/ check and balance here.

Today is publication day for my book DO NOT GO GENTLE: The Case Against Assisted Death. Kim Leadbeater's bill was the catalyst for writing it, and at the time, it felt like the task was urgent. Back then, the positive stories about assisted death sounded to me like fairytales. I wanted to explore the reality of assisted death more deeply. Justifications offered by supporters were so often mindless mantras about rights and "choice", but I wanted to see how it all fitted together, and what choices it gave to vulnerable people in reality. The writing period was a strange time. Every day I faced the fact of mortality, the nature of pain and suffering, and the darker sides of human nature. Yet I was also completely uplifted by the selfless compassion that humans can show to one another, when life is ebbing away. This week, Leadbeater's bill runs out of time. There is already talk by pro-MPs and lobbyists of flooding the private members' bill ballot, so that a similar bill arrives in the next parliamentary session. In the meantime, the public has some time to think properly about what kind of society we actually want. Is it one where state-sponsored death is treated as a solution to social ills? Or can we stand together to get something better, and far less bleak? Though times are hard, I still hope for the latter. I also hope that my book will be widely read, and especially by those tempted by fairytales.

‘Assisted death is about reducing costs, not reducing suffering. Whenever assisted death is rolled out, palliative care and hospices suffer. We are going to a very dark place.’ Kathleen Stock (@Docstockk) on the chilling economic logic of assisted dying:

Mae ymchwilwyr ym Mhrifysgol Caerdydd eisiau clywed gan bobl sydd â phrofiad o lewcemia myeloid acíwt (AML). Gallai eich mewnwelediadau helpu i lunio astudiaeth newydd sy'n archwilio a allai profion gwaed leihau'r angen am biopsiau mêr esgyrn ymwthiol. ymchwiliechydagofalcymru.org/ydych-chi-erio…

Too many adults with a learning disability and epilepsy are still at risk of dying prematurely” A new study finds epilepsy as a leading cause of death among those living with a learning disability and #epilepsy. Learn more: sudep.org/too-many-adult…

“Only by properly understanding past deaths can lessons be learnt for the future.” The EDR is where the bereaved and health professionals can share info about epilepsy-related deaths. Those who report will be helping research and improve epilepsy safety: tinyurl.com/edrplayskeyrole

Clive Treacey was failed in life, but his family are ensuring there is a lasting legacy in his name. For #worldautismawarenessday, learn more about the Clive Treacey Checklist: sudep.org/checklist-must… #SUDEP #epilepsy #epilepsyawareness

Sorry to read this Will.. It goes beyond justice now. It’s about the inhuman way families are treated — decades of being dismissed, ignored and forced to fight for accountability with no meaningful action — It’s a system built on investigations into investigations, while others profit from families’ grief and accountability never comes That is the real problem. RIP 🕊️ Robbie

Join Dr Jamie Nash at our July #ResearchWalesFaculty webinar, ideal for early-career researchers looking to improve their funding track record and build resilience in a competitive environment. Register now for this FREE webinar on 8 July: healthandcareresearchwales.org/about/events/e…

Share it Purple by registering for our free resources: register.enthuse.com/ps/event/Purpl… Share our posters and Purple Day Pointers to help spread awareness and knowledge about epilepsy, its risks and how to stay safe. 💜 #SUDEP #epilepsy #epilepsyawareness #PurpleDay2026

Want to help spread awareness of epilepsy and SUDEP? Share our Purple Day Pointers: Did you know that 1 in 20 people will experience a seizure in their lifetime? Receive our free resources: register.enthuse.com/ps/event/Purpl… #epilepsy #sudepaction #PurpleDay2026

We have free tools to keep those that live with epilepsy safe, including guidance for health professionals: EpSMon app: sudep.org/about-research… SUDEP and Seizure Safety Checklist: sudep.org/about-research… Children’s Checklist: sudep.org/about-research…

Can you support us by donating today? 💜 All that we do is about the people we are doing it for, whether that is those who have lost their lives to epilepsy or the families and loved ones who are left behind: sudep.enthuse.com/donate#!/ #PurpleDay2026 #SUDEP #epilepsy

“Brian was 47 when he died of SUDEP in Barlinnie Prison. He had struggled with alcohol and drug addiction from the age of 14, and died on remand, alone in his cell.” Learn more: sudep.org/brian-shouldnt… Share your story at info@sudep.org #SUDEP #epilepsy #PurpleDay

Want to help spread awareness of epilepsy and SUDEP? Share our Purple Day Pointers: It is estimated up to 70% of people who live with epilepsy could live seizure-free if properly diagnosed and treated! Learn more: sudep.org/events/purple-… #epilepsy #sudepaction #PurpleDay2026

Thank you all for supporting us for #PurpleDay 2026! We appreciate everyone who has shared our messages and helped us to reach those who need information about epilepsy and support the most. We couldn’t do what we do without you 💜

Earlier this month, Tanya Russell held another spectacular Purple Ball in memory of her daughter Johdi 💜 A big thank you to all involved for raising an incredible £3430! @ProboMedicalLtd If you’re inspired by Tanya, get in touch with our team at fundraising@sudep.org

Yeah but @wesstreeting…..the NHS is still funding the abuse of autistic people and people with learning disabilities in psychiatric hospitals. Could you change that please?

Tomorrow we are going to be sharing the ataxia journey of our charity founder and chairman, Alan Thomas. If you would like to share Alan's story, particularly those who know Alan within the rare disease community, we encourage you to do so! #Ataxia #PatientStories #Awareness

Want to support us for #PurpleDay2026 but still unsure how? 💜 Why not Wear it Purple for work on Thursday, 26th March? Dig out a purple t-shirt, paint your nails or find purple socks and share the memo with your colleagues! Don’t forget to tag us in your photos @SUDEPAction