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???????? ?. ???????'s Fundraiser:

Awareness Muscular Dystrophy Duchenne/Becker

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THE STORY:

Who we are: The Panhellenic Association Awareness Muscular Dystrophy Duchenne / Becker began its actions in March 2014. The reason for the foundation of the club was that the President of the club Mr Nikolaos Tsakris is he suffering from Duchenne muscular dystrophy and knows very well what faced by sufferers and their families, and the large gap in Greece in infrastructure and services issues. About the Duchenne / Becker: The Muscular Dystrophy Duchenne / Becker is a deadly disease that mainly inherited from the mother to the boy, because girls / women are carriers. In exceptional cases observe rare gene mutation in the fetus which can not be detected by prenatal testing. The first symptoms begin to manifest from childhood about 2-3 years and gradually begin to lose their mobility while in adolescence the disease affects the muscles of the heart and respiratory. Life expectancy rarely exceeds 25-30 years. The Muscular Dystrophy Duchenne / Becker is a condition that causes muscle weakness and individuals to look after themselves first need a manual wheelchair and advanced their transfer done with the use of electric wheelchair if their mobility is limited to the fingers. Objectives of the Association:  One of the goals of our Association is to inform and raise awareness of wider social groups and status of all women before genetic testing.  Update wider audience for muscular dystrophy Duchenne / Becker.  public awareness.  Creation volunteer actions.  Create research opportunities and scientific training of scientific personnel.  Creating Rehabilitation Center  OrganosiImerida in TEI Athens and Crete Social Work department of awareness of both the teachers and students of the sections.  Cooperation with other institutions and organizations to organize workshops and sessions.  Updating our association for the actions of media participation in conferences and workshops at home and abroad.  Creating medical scientific team both in the area of ​​the club and the hospitals affiliated to the direction and evaluation of each patient individually.  and a monthly meeting of the medical scientific team for better evaluation and marketing of each patient. Workshops Creating such workshops (clay workshop, dance, photography) (The workshops can, maintain the studies of the club and people will be interested to learn the art of clay dance and photography).  Creative children.  psychological support parents and children. Sponsorship Needs:  Dimiougia Flyer (full prospectus)  manning social worker for the orderly possible operation of the club  Search sponsorships with skoipo creating recovery center.  Find sponsorship for the actions of the association.  People with muscular dystrophy should be monitored once a year by the medical scientific team including:  physician promptly  neurologist  cardiologist  pulmonologist  physiotherapist  occupational therapist  dentist  As two times weekly require physiotherapy exercises, 3 times a week hydrotherapy in warm water and daily intensive stretching exercises at home. Annual cost 15,000

https://www.facebook.com/agm.awarness2013/

agm.awareness2014@gmail.com

 

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