|Association SLA aide & soutien|
Official declaration (date of birth), april 17, 2012 under french n° R.N.A. W134004446
Publication: april 28, 2012 under the n° 20120017
SIRET : 751 470 808 00013
Our association helps french persons (or living in france) affected by the Amyotrophic Lateral Sclerosis, ALS, or Lou Gehrig disease. We contribute to paramedical education by my Lou Gehrig's module and financing the research by caritative action days.
|Presentation brochure (pdf)|
had my first symptoms in July, 2005 and I crossed all the stages of
this disease. Since January, 2010, I only have my eyes which move and I
am completely assisted by machines. It's seemed to me natural to
make benefit for the largest number my experience and the
experience of my wife, also very active on this subject.
the social network Facebook, I am in touch with near two
hundred persons and having taken the measure of their isolation, I
opened an ALS page "help and support", then a Web site bearing the same
name to help them.
Often linked to a lack of information, numberous families are only faced with this heavy pathology, or insufficiently accompanied for two reasons: the first one is due to the lack of information, they don't benefit from the number of hours for having at home health aids every day and even at night. The second, is that there are disparities concerning the aids from a region to an other one and the biggest injustice concerns the persons of more than 60 years by the ALS, which are not any more entitled to the aids on the pretext of their age.
At the begining of the project for mediatization, several activities require a budget which depends only on sponsoring and on personal investment. Being able to obtain subsidies, being covered by an insurance and benefit from a fame, I owed create an associative structure.