Dr Jules Montague

Two boys died after a gene therapy. This family won’t give up hope. The Revell family hoped a gene therapy could buy time for their sons, who have a rare and fatal disease. After two patients died, the drug’s manufacturer halted dosing under pressure from the FDA.

"It’s actually a good thing we have to worry about our kids dying from this product, because it means we have a product to be worried about," he said. "If you don’t do anything for a young man with Duchenne, he’s going to die."

www.washingtonpost.com/business/202...
#neurology #neuromuscular #DMD

“Does he put listening devices in your hair?” Mary asked, about the professor. “Does he ever ask you to say things to me?”

www.newyorker.com/magazine/202...

#psychiatry #neurology

Episode 325: The Double (7.18.2025) In 2023, two men told police the same story: each man said that his name was William Woods, and that his identity had been stolen.

thisiscriminal.com/episode-325-...

One William Woods was telling the truth. The other was living his life How a decades-long deception saw an innocent man end up in jail

There are simple stories of mistaken identity. And then, there are identity stories much darker than that. From Charlie McCann @economist.com and also wonderfully covered by Criminal Podcast, link below. www.economist.com/interactive/...

The Most Interesting Email I Ever Received: Remembering the Incredible Life of DIY Geneticist Jill Viles In 2013, ProPublica reporter David Epstein was contacted by a woman with a wild story and a batch of photos she believed were clues to the mystery of her condition. Turns out, she was right.

NEW: Remembering the Incredible Life of DIY Geneticist Jill Viles

In 2013, ProPublica reporter David Epstein was contacted by a woman with a wild story and a batch of photos she believed were clues to the mystery of her condition. Turns out, she was right.

Someone posted an Amazon review of Salt Path in 2021. Here's part of it.

A beautiful piece of memoir from Geoff Dyer in @harpers.bsky.social

Fraud, arrogance, and tragedy: the case of Doctored Over the past few months, investigative journalist Charles Piller has published—eg, in The Daily Mail, The New York Times, and Science—multiple reports of supposed historical fraud in Alzheimer's dise...

John Hardy pushes back: 'I sincerely hope the book and its attendant publicity do not dissuade people who might benefit from an amyloid-lowering drug to decide not to seek help.' www.thelancet.com/journals/lan...

Credits: Producer: Eve Streeter | Original music: A Brief Encounter by Max Walter | A Raconteur production for BBC Radio 4

Most importantly, a final thanks to our interviewees – Geraint, Jacqui, Dave, Gill, Sue, Terry, Gill, Natalie and Jo – who shared their stories so openly, with such warmth and generosity. A privilege to spend time together.

Huge thanks to Rare Dementia Support, especially Nikki Zimmermann, who has been instrumental in making this documentary. www.raredementiasupport.org

Details of organisations offering information and support are available at BBC Action Line: bbc.co.uk/programmes/a... Some charities and research groups to mention: @alzheimerssoc.bsky.social @alzheimersocirl.bsky.social www.ftdtalk.org www.ftduk.org/https://www....

YouTube video by The National Brain Appeal Actor Stephen Graham supports our appeal

Learn more about the campaign to build the world’s first centre for rare dementias - supported by Stephen Graham. www.youtube.com/watch?v=cqxU... #dementia #neurology #neuroscience

Our final BBC R4 episode of Dementia: Unexpected Stories of the Mind features Jo. She speaks eloquently and powerfully about her diagnosis of semantic dementia (also known as semantic PPA). Her vocabulary is fading away – all the more poignant because she is a novelist. www.bbc.co.uk/sounds/play/...

Credits: Producer: Eve Streeter Original music: A Brief Encounter by Max Walter A Raconteur production for BBC Radio 4.

Sir Terry Pratchett and his rare Alzheimer's diagnosis Read about Sir Terry Pratchett's dementia diagnosis of posterior cortical atrophy (PCA), a rare type of Alzheimer's disease.

Terry Pratchett had a diagnosis of #posteriorcorticalatrophy, too. He wrote about his experiences here: www.alzheimers.org.uk/blog/terry-p...

To understand the visual changes of PCA, check out this animation (directed by Simon Ball) from Rare Dementia Support. www.raredementiasupport.org/learning/do-... Commissioned with @wellcometrust.bsky.social and made in partnership with @alzheimerssoc.bsky.social @uclofficial.bsky.social and others.

BBC Radio 4 - Dementia: Unexpected Stories of the Mind, Susan Jules Montague and William Miller meet Susan, who has a rare type of dementia called PCA.

Today’s BBC R4 episode of Dementia: Unexpected Stories of the Mind featured the brilliant Sue and Terry. They spoke about Sue’s diagnosis of posterior cortical atrophy (#PCA). If you missed the episode, here’s a link to listen back. www.bbc.co.uk/programmes/m... #raredementias #dementia #neurology

Credits: Producer: Eve Streeter Original music: A Brief Encounter by Max Walter. A Raconteur production for BBC Radio 4.

Details of organisations offering information and support are available at BBC Action Line: www.bbc.co.uk/programmes/a... More on HD research here ucl.ac.uk/ion/research... #neuroscience

Gill’s parents had already had their seven children before they realised Huntington’s was in their family and could affect generations to come. Today's @BBCRadio4 repeat episode of our series features the incredible Gill and Natalie #Huntingtonsdisease #neurology
www.bbc.co.uk/programmes/m...

@leadcoalition.bsky.social

More about fundraising and research featured in our interviews later this month (three episodes to go), including by
Rare Dementia Support and the National Brain Appeal.

Credits: Producer: Eve Streeter Original music: A Brief Encounter by Max Walter. A Raconteur production for BBC Radio 4.

@lewybodysociety.bsky.social and Dementia UK have produced this excellent fact sheet on managing some of the symptoms we spoke about www.dementiauk.org/wp-content/u...

Home — Another Presence A film about dementia, hallucinations and altered perceptions. Produced, Directed and Animated by Simon Ball. With Dr Rimona Weil.

There’s an incredible film called ‘Another Presence’ from Simon Ball with support from Alzheimer's Research UK. It that explores hallucinations and altered perceptions in #DLB. anotherpresencefilm.com

We aim to shed light on how Parkinson’s disease can affect thinking and memory. Our ultimate goal is to develop treatments to slow the progression of dementia in Parkinson’s disease.

Thanks to neurologist and clinician scientist @rimonaweil.bsky.social for her wonderful help with this episode. Find out more about cognition in Parkinson’s disease and Lewy Body Dementia here: weillab.com

Today’s episode of our series features Dave and Gill, two fantastic interviewees. Dave was diagnosed with Dementia with Lewy Bodies (#DLB) in 2020.
www.bbc.co.uk/programmes/m... #lewybodydementia #raredementias #dementia #parkinsons #neurology

Our thanks to our interviewees Geraint, Dave, Gillian, Susan and Jo – and their families and friends who joined us. Huge thanks to Rare Dementia Support, especially Nikki Zimmermann, who has been instrumental in making this documentary. www.raredementiasupport.org

Credits:
Producer: Eve Streeter
Original music: A Brief Encounter by Max Walter
A Raconteur production for BBC Radio 4.
Details of organisations offering information and support are available at BBC Action Line: bbc.co.uk/programmes/a...