Call for MPS III C families

Call for MPS III C families.

We appeal to families European, North American, South American, Australian or any other country in the world concerned with Sanfilippo Syndrome Type C or Type III Mucopolysaccharidosis MPS C.

By translating the text into six languages (German, Italian, Spanish, English, Portuguese, French) contact and we hope to rally the greatest number of families.

Indeed, an ambitious research program on tests murine (mouse guinea pig) could start soon with the initiative of the Canadian researcher Alexey Pshezhetsky in collaboration with a leading Australian researcher John Hopwood who know very well the typical cases of the disease. This research program will last 5 years and years will be crucial for overcoming Sanfilippo disease type C.

It is of utmost urgency to bring up families whose children are affected with type C so they will contact us for information on this project.

The objective is clear we must find more than 800,000 dollars to fund the research program as a whole is 160,000 dollars per year for 5 years … If we get 30 families around the world and that each of these thirty Families shall conduct a donation in his country to the tune of $ 6000 a year: we will fund the project largely from these two researchers on these 5 years ….

Currently, we do not know enough families affected by Sanfilippo disease type C because is even more rare than type A and B.

Although type C disease Sanfilippo is « even more rare than type A and B » and also appears difficult to combat, he is nevertheless as our greatest asset and our greatest strength because we can also more easily meet , to know, learn, communicate, meet, to find generous donors and fight together, and finally united to save our children and last talk of hope ..

The objective will be achieved if this call is addressed internationally. It is imperative to relay information in hospitals and reference that identify cases of Sanfilippo disease type C of each country. But also send information to all MPS membership organizations in the world who will commit to a comprehensive census.

We are also looking for a contact in each country who will ensure coordination and relay the information known about this disease to other families affected by the type C of his country.

In the hope that we will combine to eradicate the disease Sanfilippo MPS III type C very quickly get in touch with the people concerned and indicated below.

Let us remember the phrase: « It was David against Goliath » to describe the fight of our children against this disease …

MADAME ZAFRA GARCIA BELEN bzafra@gmail.com Spain

MRS MARKS RAQUEL @ gmail.com marques.raquel4 Portugal

MRS JILL WOOD jillwood73@hotmail.com USA

MRS BURKE NANCY Burkejlk@msm.com USA

MR Higonnet GUILHAIN guilhain.higonnet @ wanadoo.fr France

SIR FREDERIC MOREL frederic.morel @ fondation-sanfilippo.ch or frederic.morel @ nat-services.ch Switzerland



2 commentaires

  1. BIETH Sébastien dit :

    J’ai deux soeur atteinte de cette maladie et je souhaiterais vous apporter mon soutien….

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