Stéphane has undergone various reviews in Blois, Tours Bretonneau in the hospital in La Salpêtrière in Paris. After confirmed diagnosis, the latter two hospitals said: "There is unfortunately no cure to date and the evolution will be to a slowly progressive worsening of symptoms. We must of course continue kinésithérapique rehabilitation of balance and speech. "
Stéphane saw a progressive increase faster than expected: disorders of gait and balance, use of cane and after 50m walk need wheelchair because of fatigue of standing, problems with coordination four members, resulting in swallowing food wrong, from the speech. It conducts two sessions of physiotherapy and speech therapy per week that are beneficial.
He had to leave his life of leading IT company with its commitments as President of Civic Association Neighborhood Romo East (his approach and his speech was received in the wrong direction) courageously confronts the disease with the Help comforting his wife.
He perceives the adult disability allowance (AAH) 666.96 € uros and increase for independent living (MVA) 104.77 € uros, aid per month for a family of five.
Not long ago, in late March 2009, a door of hope opened: be treated in Holguin, a city of 360 000 inhabitants, Cuba. Indeed, the number of patients with this disease is important in this island. Dr. Jorge Rodriguez Chanfran, deputy director of the CIDEM (Center of Research and Development of Medicines) and Luis Perez Velazquez, director of CIRAH (Center for Research and Rehabilitation of hereditary ataxias) have advanced in their research and provided some progress .
Stéphane clings to this board but the rescue costs exceed its capacity: 2 300 € for the care and 2 500 € for travel and accommodation required 15 days of attendance.
Stéphane expressed a certain weariness with the arduous vis-à-vis the administration.
Because there are also other concerns, such as the development of his bathroom to put a shower of soil (in Italian), and also worked to make the insurance invalid credit habitat.
The administration, is it good for citizens, especially when the latter is more diminished by the disease? Continue its path of life without some aid to which they are entitled because it is complicated. Yet, how many relief and counseling would be beneficial.
Stéphane has just created an association to qualify for certain grants that can not pass that through the association.
Un traitement pour Stéphane **
5 rue de Gy
41200 ROMORANTIN
FRANCE
Tél : (33)9 51 74 58 15

**(Treatment for Stéphane)
 
From: Roger Sémery
Published in: Le Petit Solognot
: 22 July 2009 

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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