Orangetober
Happy October! Please join in with Orangetober this month: every time you see something orange, take a photo of it and post it online, along with a brief explanation. You can use your own …
News
A question raised in parliament about EDS patients with neck instabilities who have to crowdfund for treatment overseas because there’s no help available on the NHS
Today in Prime Minister’s Question Time, a Member of Parliament raised a question about one of his constituents who, like me, has neck instabilities caused by EDS and is also having to crowdfund for …
A Summer Night’s Dream of Poetry with Jenny Rowbory
Jenny invites you to join her for ‘A Summer Night’s Dream of Poetry’. She has made a beautiful 14 minute video of her performing her favourite poetry by other poets, and a final poem of …
Summer Reading Challenge
Summer Reading Challenge: try to read (or listen to via audiobook) as many books as possible over the summer and get friends/family to sponsor you per book that you manage to read, all in …
Thank you – we smashed it over the 48 hours!
A huge thank you to everyone – to those who donated and to those who spread the word about the matching donations over Jenny’s birthday. We are overflowing with gratitude and overwhelmed by the kindness …
Donations are going to be matched on 29th+30th April! Plus a message from Ann Rowbory
This is Ann Rowbory, Jenny’s mum and carer. Tomorrow, 29th April, is Jenny’s 39th birthday. A generous donor has offered to match donations on 29th April and also 30th April, up to the amount of …
A surprise poem and some good news
I have written a new poem called ‘Resurrection Song’, which I perform here on YouTube (the video is only 4½mins long and it is also illustrated!): I would love it if you were to share …
Christmas reminiscences
What are your Christmas traditions and memories? Leave a comment to tell me about your own traditions! This is what I remember of Christmas up until the age of 18 and a half, which …
The Peanut Butter And Jelly Challenge To Mark Twenty Years Since I Became ill
I’m launching my ‘Peanut Butter and Jelly Challenge’ fundraising video to mark today, which is twenty years ago to the day when I first became ill at 18 years old. You can watch the video …
My Life With A Twist (and how to save it)
This is the big one! Here’s my new video update on YouTube, with a twist, explaining my life and why it is getting more urgent as time goes on to fundraise the essential neurosurgery that …