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This fundraiser ended on 07/23/11

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The Amend Family is hosting the first annual "Jordan's Ride for Research", with proceeds benefitting the Dravet Syndrome Foundation

We would like to introduce you to a very sweet and affectionate seven-year-old boy living in Palos Hills, Illinois. Jordan Amend has an infectious smile and is always happy. At 9-½ months of age Jordan had his first seizure; it lasted 25 minutes. By his second birthday he had logged over 145 seizures under his belt, and to date this number has risen to over 600. While most are brief, many have lasted between 25 and 45 minutes and necessitate calls to EMS. Jordan has been diagnosed with an intractable form of epilepsy called Severe Myoclonic Epilepsy of Infancy (SMEI), or Dravet Syndrome, and autism. Dravet Syndrome is a rare and catastrophic form of epilepsy for which there currently is no cure. Jordan will not outgrow these seizures, and children with Dravet syndrome have a high mortality rate. This condition has left Jordan unable to speak, attend school, have friends, or become toilet trained.

The Dravet Syndrome Foundation is a volunteer-based non-profit organization (Tax Id #27-0924627) dedicated to aggressively raising research funds for Dravet syndrome and related conditions while assisting afflicted individuals and families, and on July 23, 2011, the Amend Family will host the first annual Jordan’s Ride for Research and Benefit, beginning with a poker run at Barracos Pizza, 3701 West 95th Street, Evergreen Park, Illinois, and ending with a Benefit at Bourbon Street, 115 Bourbon Street, Merrionette Park, Illinois, with proceeds benefitting the Dravet Syndrome Foundation. It will be a fun filled family event that will include pre-ride activities at Barracos; a leisurely motorcycle ride, stopping at five locations where you will enjoy entertainment and activities, as well as pick up your next poker card; there will be tons of raffle prizes; dinner; and a concert given at 9:00 PM by Justin Russell. We are expecting over 300 people to attend the event.

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