Children With Spinal Muscular Atrophy, Foundation Kharkiv’s

The brief review of activity and history of Foundation Kharkiv’s Charitable Foundation “Children With Spinal Muscular Atrophy” – acronym CSMA August, 2004 creation of the organization which could unite parents and children with rare genetic disease is initiated, would help in informing patients on last scientific development, attraction of experts for development and introductions of techniques with which work leading establishments abroad, development of own directions of treatment. September, 2004 is opened the Internet-portal devoted first of all to an information selection about last achievements of foreign experts in the field of genetics, neurology. November, 2004 official opening the Kharkiv’s Charitable Foundation took place. January, 2005 Fund became a member of international Alliance IASMA (http://www.iasma.net), having presented Ukraine among the countries leading the most active struggle against a spinal muscular atrophy. February, 2005 The Fund accepts international name FSMA Ukraine and to become the partner of American parental organization Families of SMA (http://www.fsma.org). During activity of Fund under the reference public actions are lead to official bodies, educational journal materials are prepared, the video data, devoted to a problem of a spinal muscular atrophy are published. The certain work on attraction on volunteer to a basis of experts of various structures is executed. June, 2005 the Foundation is invited to be the participant of conference of parents and professionals in Philadelphia, on meeting of chapters of the parental organizations of the international Alliance. September, 2005 The CSMA was officially approved as member at the Board of International Co-ordinating Committee (http://www.smartgroups.com/groups/iccmembers) - worldwide group of interested clinicals, researchers and patient advisory groups all dedicated in focusing efforts to find effective treatments and ultimately a cure for Spinal Muscular Atrophy. October, 2005 The Families of SMA Ukraine (Kharkiv's Charitable Foundation "Children with spinal muscular atrophy") has provided carrying out the First Ukrainian Families Conference. within "II Ukrainian Congress On Clinical Genetics With International Participation "Inherited Metabolic Diseases". March, 2006 The CSMA full membership of EURORDIS (http://www.eurordis.org) was officially approved at the Board of Officers meeting held on 31-th March 2006. June, 2006 The CSMA took part in the FSMA Annual Conference in San Diego. January, 2007 The CSMA associate membership of NORD (http://www.rarediseases.org) was officially approved. January, 2008 The CSMA membership of TREAT NMD The brief history requires during. This history of Foundation must not be broken, powerful support is necessary, both for authority, and volunteers.