WHAT IS LAFORALafora Disease, also called Lafora Progressive Myoclonus Epilepsy, is a rare progressive and degenerative form of epilepsy that strikes children usually between the ages of nine and fourteen. Symptoms become increasingly worse within a short period of time, and include grand mal and absence seizures, myoclonic jerks, cognitive decline, difficulty walking (ataxia), severe hallucinations and dementia, eventually leading to death within ten years of onset. It currently has no cure. CHELSEA'S HOPE LAFORA CHILDREN RESEARCH FUNDChelsea's Hope began in the fall of 2007 as a means to share our story about our daughter Chelsea and her diagnosis of Lafora disease. Feeling helpless, hopeless and alone is our sorrow we began to realize we could no longer continue to live under the black cloud of despair that was Lafora. We connected with the world's leading experts in Lafora research and soon thereafter, through the power of the internet, began to find other Lafora families and encouraged them to join our cause of creating awareness, connection and raising money for research. September 2009, Chelsea's Hope filed for and became an IRS 501(c)3 non-profit organization. All donations are tax deductible to the extent permitted by law. Nonprofit Public Benefit California Corporation EIN: 27-1008382 MISSION STATEMENTThe specific purpose of this corporation is to aid and assist the Lafora researchers by raising funds for research, treatment and cures for those affected by Lafora. In addition, our goal is to raise awareness about Lafora and to provide connection and assistance for families in the form of education, emotional and general support. |
||||||
|
Chelsea's Hope Documentary Movie |
|
Meet the Children of Chelsea’s HopeChelsea’s Hope Families Shamoan Ahmed Sonam Ahmed Abdul Ali Jessica Ambroe Elisa Brackin Jake Buie Rebecca Cotton Jessica Faludi Milana Gajic Tatjana Gajic Chelsea Gerber Taylor Nicole Mankins Jessica Masoner Kristen Rice Adela Richer John Sharp Angel Shumate Lucy Terceira In Memoriam“Those we have held in our arms for a little while, we hold in our hearts forever.” Matthew DeSimasAmanda Gellel Diane Gellel Douglas Jacob Lucken Janine Lee Rodriquez Kristopher Shumate
| ||||
