The Champsaurs’ homeAfter years of exchanging emails and longs talks on the phone, we finally met face-to-face in early August.  I had the pleasure of meeting her husband Laurent, a great fellow but somewhat reserved, and we got along well from the start, because I’m not a big talker, either. I was absolutely enchanted by the splendor of the mountain landscape around Gap, which I was able to visit and photograph during our several long outings in the car.  I had not been to the mountains for more than 20 years, so it was really wonderful to rediscover the beauty of the landscape.   In the evenings, once we got back to their house, we usually stayed in the garden visiting, with Lana and Flora, the Champsaurs’ cat and dog, for company. Even though I’m useless at cooking, I learned to make potatoes au gratin and crepes with jelly.

With Henriette and Laurent, we talked about all sorts of things, but especially about Friedreich’s ataxia and about our friends in BabelFAmily.  Henriette confided that she dreams of someday having a visit all at one time from MariLuz Gonzalez Casas, Marion Clark, and myself, since her beautiful home is set up with three guest rooms.Unfortunately, I wasn’t able to meet Claudine, Henriette and Laurent’s daughter who has FA, because Claudine and her husband and their two children were vacationing at the beach, so that will have to wait till next time.  My French friends would have liked for me to stay longer than I did, but I had commitments to get back to in Milan. The day I left Gap, I was showered with gifts to take home:  three jars of raspberry jam that Henriette had made, pork liver pâté made by Laurent, some pâté de foie gras, and a “French bolster,” one of those long, really comfortable pillows that you can’t find anywhere in Italy.   The strongest feeling I had was that of having found some real, true friends with whom I will stay in contact, and whom I hope to have visit in my own home very soon.As soon as I got back to Milan, I made a bank transfer to the BabelFAmily Association, specifying “BabelTravels, for my stay with the Champsaurs”.  This way, I won’t be the only one to have benefited from this vacation.  Through BabelTravels, the magnificent hospitality that I received free of charge from the Champsaurs will go to increase BabelFAmily’s budget for research.  I hope that through the BabelTravels Project, more and more people around the world will be able to travel, meet up, and get to know each other, while at the same time contributing to this innovative way of funding research into Friedreich’s ataxia.

My best to you all,

Gian Piero Sommaruga, president of BabelFAmily

 

PS -Those who would like to make a donation to BabelFamily can complete a bank transfer using the following information:

Asociación BabelFAmily:  IBAN: ES81 0049 4429 8925 9000 6013 - SWIFT:  BSCH ES MM

Thank you.

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

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:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
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.

 

 

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