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Emmy award-winner brings Huntington’s out of the shadows


Emmy award-winning war correspondent, Charles Sabine OBE, has been based in the Cotswold village of Avening, since he left the battlefields of Eastern Europe and the Middle East to become a global advocate for people suffering the fatal genetic condition, Huntington’s disease, which has taken his father, uncle, and two brothers.  

Sabine, who is also now in the early stages of HD, himself, has committed what remaining time he has, to bringing Huntington’s out of the shadows of stigma and shame with his global initiative, Hidden No More

The pinnacle of this work was an event in Vatican City (before-Covid), when Pope Francis became the first world leader to embrace people with HD and to declare Sabine’s words globally: “We want to say to the world, it is time for Huntingtons disease to be Hidden No More!  It is not just a slogan, but a commitment we must all foster.”  

The events of that day and the remarkable journey made by HD families from some of the remotest parts of the world, were made into a highly acclaimed short (38 minute) film, ‘Dancing at the Vatican’ which premiered first in Hollywood.  Its European premiere at London’s BAFTA, took place the month before Covid struck.

Dancing at the Vatican | Huntington’s documentary | Full Film – YouTube

The star of the film is a fifteen-year-old girl with Huntington’s disease from the backstreets of Buenos Aires, called Brenda.  Brenda was first brought to Sabine’s attention when he received an email from a doctor in B.A. with whom he had collaborated in fundraising, Claudia Perandonez, telling Sabine of the terrible plight of Brenda, deserted by her mother, shunned by class-mates because they did not want to ‘catch’ her disease, and refused a precious laptop by her school because of her terminal condition.  The email ended: If you think you can help us in any way, I would thank you because this case in particular is very distressing for me.  Claudia”

Sabine was reading this email in his local pub, the Bell, when the only other person there, was a local retired man called Archie Hardman.  Archie was known in the village for his stoic demeanour – in the words of his brother-in-law, ‘I never saw him show any emotion, ever, until that day!’  

Purely in conversation to answer a query from Archie about what he was working on, Sabine told Archie about Brenda and the school, including the laptop matter.  Tears appeared in Archies eyes, and he said in his broad Gloucestershire accent: ‘I’ll fooking pay for it myself!  

Archie, who lives on a state pension, gave Sabine one hundred pounds to send to Brenda – once converted to Argentinian peso wait was indeed a significant sum. Brenda’s aunt Norma, who looked after her, took a picture of Brenda smiling holding the money and the card sent by Archie and Sabine had this printed out for him. (see attached photo) 

From that day, every Christmas and birthday, Archie put that picture and a letter on a glass vase and collected money in the Bell for Brenda.  Because of a tanking Argentinian economy, the money sent in hard currency was life changing.  In Dancing at the Vatican, Brenda is seen getting a bottle out of a fridge.  That fridge in fact, did not work; a city where temperatures reach 40 degrees, and they had no air conditioning.  The money from Avening bought them a new one (there are pictures of it).   The ‘bed’ Brenda had to sleep on was the one her father had died on with HD on her fifteenth birthday; Archie’s money bought a new one for her.  These were transformative for Brenda’s quality of life, and today, whilst very frail indeed, she is still alive.   

Despite the fact that it has been seen around the globe in six languages on Amazon Prime and You Tube, Archie, who does not have a computer or smartphone, has never seen it. 

So, we are bringing the film to Archie.  

He will be in the front row at a special screening at Avening Memorial Hall, on Friday April 8th. The doors open at 6.45pm, the film is suitable for all ages and entrance is free.

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