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Translation: Marion Clark
(into chronological order, from the top down)
Message sent by Melanie on Friday, June 27, 2008
Subject: Re: The Cake Eaters
Last night, with Claudie [Baleydier] and Talie [Mortier], we went to see the film [The Cake Eaters] subtitled in French—whew!!!
A very very beautiful film, touching and full of humor. The producer was there, a very beautiful, superb young woman whom we were able to speak with. Me, not for long, because one of her friends monopolized my time after the movie to talk—a really handsome guy, girls! He was very touching--he was a little bothered by the language barrier, but he had tears in his eyes talking with me. It was beautiful (lol). At the end he gave me a kiss and whoa, girls, a really handsome boy.
The film deals with many different subjects. I’ll speak from the viewpoint of Georgia, a 15-year-old young woman with ataxia, close to her grandmother and in conflict with her mother. She gets to know Beagle, a young man of 20 who lives with his father and whose mother has died.
Beagle took care of his mother until the end of her life, since his father wasn’t able to and preferred to have a secret affair with Georgia’s grandmother. A beautiful story of love between people of a certain age. Georgia chooses Beagle for her first sexual relationship. Beagle is a nice boy but it’s all going a little too fast for him.
In short, I’ll stop there, I’m not going to tell the whole story. The actress who plays Georgia is very good. It’s really well done, I recognized myself especially in her way of thinking. I had tears in my eyes four or five times. But just a bit, because the humor in the film keeps it from being sad.
All in all, I really enjoyed myself!!!
RE: [afaf]RE:[FA_babelFAmily]FRA: The Cake Eaters
From Talie Mortier
Hi, it’s Talie. Me, too, I really enjoyed the film---I would have preferred that the actress be someone who really has FA, but after the film, I was told that FA is too tiring…I don’t know, what do you all think?
From: Claudie Baleydier
I was with Melanie and Talie, and I’m very glad that Melanie wrote her reactions, because in speaking, she’s a little timid, for those of you who might not have known!!! Before the film, she and Talie were a little fearful of identifying themselves too much with Georgia, but in reality, they didn’t recognize themselves all that much, except for a few reactions. Both were in agreement in saying that, for once, ataxians were portrayed who weren’t feeble (which they aren’t, but which many believe they are because of the handicap). For me, not having ataxia myself, I couldn’t judge as well as they could. In any case, [the film] speaks with tact of the sexuality of Georgia, who wants to have a sexual experience, as she says, “before it’s too late”, but one can also see the strong feelings she has, afterwards, with Beagle.
Other important points (for the story of Georgia isn’t the only one in the film)—the beautiful love story of two older people, and then also the idea that besides physical handicaps, there are other types of handicaps in families.
In addition, as Melanie has said, the producer is young, pretty, adorable—I wasn’t able to see her again due to their full schedule, but I have her e-mail address, and I hope to be able to see her again, at any rate, to discuss a non-commercial use of the movie.
In addition, after the movie, I was able to speak about ataxia and about AFAF [French Association for Friedreich’s Ataxia], and that’s always a good thing.
From Richard Baleur
Sent Wed. July 2, 2008
I can understand that argument - filming can be very tiring (for anyone, for that matter). For greater credibility, it would have been interesting to have a person actually living with FA playing the part. Personally, I’m in charge of a theater troupe, I’m an actor in another troupe, and I have produced a documentary on life in a neighborhood in Tarbes (as a community organizer). With this disease, these are challenges, but I find them stimulating. With a little willingness, a team can always adjust the pace of the work and adapt as needed.
In any case, I’m curious to see the film. I only hope it doesn’t lapse into melodrama. Tell me if you know if the film will be distributed.
Message in ataxieforum.fr
Friday, July 4, 2008
That’s for sure! The film isn’t melodramatic. To see it, I’d ask Claudie to comment, thanks!
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1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.