HISTORY OF CHELSEA'S HOPEIn 2007, Chelsea's Hope was born of love, frustration, sadness, fear and ultimately HOPE. As we, Chelsea's parents, watched Chelsea lose more and more of herself to a disease that is merciless and ultimately totally devastating, we realized to passively sit and watch our child slowly die was not an option. Out of our helplessness to battle this incurable disease alone, we sought the world's leading experts. Out of our desperation, isolation, and need to communicate, we sought the internet. Out of our powerless feeling and our need to be empowered, we created Chelsea's Hope Lafora Children Research Fund. Within this community, sorrow and grief was shared, information was gained, families bonded, friendships blossomed and together we are empowered with hope. 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. |
"SAVE THE DATE!" Chelsea's Hope 2nd Annual Fundraiser PLEASE JOIN US! For details to Sponsor, Donate or Attend...click here First Annual Fundraiser - May 2009It was standing room only as 125 friends, past and present joined the Gerber Family for a few hours of reconnection, information, auction items, delicious appetizers and wine..... To read more click here. |
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Lafora Research June 2010: Gentamicin Study: Use of an antibiotic called Gentamicin to treat patients with Lafora Epilepsy. Are you eligible? |
Lafora Children
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Jess's Army has Joined Chelsea's Hope
Already, Michele (Jess's mother) and her many friends have impacted Chelsea's Hope. Please read about the Pennsylvania fundraisers that have been sponsored on behalf of Jess.
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