boléro

Some words on association " Bolero "

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BOLERO is an association in fact which was constituted to support the people reached of a genetic disease, and their entourage.

More particularly, she would like to promote and defend the interests of the patients reached of rare hereditary metabolic diseases like the phénylcétonurie, by any means adapted as well by the therapeutic one as by the follow-up and the dietetic and psychological accompaniment.

These metabolic diseases are characterized by a disorder of the metabolism of one or several acids amino which are in all proteins.

It follows that, by the absence of an enzyme of the liver, or the absence of activity of this enzyme, this or these amino acids will accumulate in the cells of the organization; Their increase is particularly toxic for the brain, and it is essential to quickly detect the disease after the birth, and to follow an adequate processing before do not appear the first signs of cerebral lesions.

The processing is based primarily on a dietetic mode which limits the food contribution of the amino acid concerned.

But to follow this strict, and absolutely necessary mode, is a real problem: the parents must, with much of attention and comprehension, to control all that them child eats.

A computer program was developed, several years ago, to make it possible to the young person to follow his mode and to secure a normal development. The program adapts to the characteristics of the affection presented by the patient, its age or its environment.

Later, the child must constantly be encouraged. No moment, its mode can be stopped, it must also learn how to be integrated completely in the social life in spite of its handicap.

Later, there will have to remain attentive with always balancing its feeding.

                    Many are the families which need supports, to manage to overcome these difficulties:

                                · of the regular dietetic consultings, the school assistances or simply to find a holiday camp adapted.
                                · then to obtain a computer and a technical or logistic follow-up to use it.
                                · but also of a social or psychological assistance to exceed the moments of crisis or the passages difficult.

And this help is not dealt with by the official organizations.

Therefore these three objectives have been retained by Boléro association, gathered voluntarily, for 3 years, around the medical team of the center Pinocchio, center specialized in the study and the processing of the metabolic diseases whose activity exceeds the linguistic limits by its establishment in the university center of Diepenbeek and the private clinic of the Hope with Montegnée - Liege.

Several actions are already in the active of Boléro " association ", it already gathered a score of data-processing equipment and distributed to the families; it is now harnessed to set up of the teams of social assistance and to promote relevant medical information to make fall the barriers and support an awakening by the company.

Even if the number of patients in Belgium does not exceed 500, the material needs are far from being reached.

We need you.

               You can help us to advance to carry out our objectives:
                                    · is by a gift to the account of 001 -- 3292878 -- 95
                                    · is while giving us your computer during its replacement.
                                    · is while bringing your competences to us.

Whatever your choice, we are convinced of your support.

In the name of the BOLERO team large a mercy.

Members of association:

Mr. Professor Baudouin FRANCOIS, pediatrist, WAREMME

Mrs. Linda VINCENTI, épse Dr. FRANCOIS, WAREMME

Mr. pharmacist DEGROOTE , WALCOURT

Mrs. Agnès BIERNAUX épse DEGROOTE, dietetician, WALCOURT

Mr. pharmacist Pierre de Goeij and Mrs., GEER

Mr. pharmacist Henri GOFFIN and Mrs., BRUSSELS

Mr. André SEVRIN, engineer , St GERY

Mr. and Mrs. pharmacists Pierre CORNIL-DEVUYST, HUY

Mr. and Mrs. the pharmacists Alain LEJEUNE-MAWET, MARBAIS