BENEFITING: NYU Langone Medical Center
EVENT DATE: Nov 06, 2016
SUDEP means sudden unexpected death in epilepsy. It is a little known consequence of epilepsy related diseases. Patients stop breathing after a seizure and die. Dravet Syndrome patients are particularly affected by this circumstance, since they are at higher risk.
Every year more than twenty more than twenty Dravet Syndrome patients die around the world and SUDEP is one of the main causes of this high mortality rate. We want to stop it.
Fortunately, we can take action. Patients at a higher risk can sleep with a monitoring device and carers can receive training in cardiopulmonary resuscitation?(CPR). This procedure has proven effective in saving patients. Additionally, there is an important research consortium studying the causes and identifying risk factors, which will enable us to take measures in order to avoid it.
How can you help us?
We are friends united in our two passions: the determination to stop this tragedy and marathons. The New York University (NYU) team offered us the opportunity to run the New York City Marathon in order to raise €15,000, which will be entirely allocated to research. We didn’t hesitate for even a moment and we set ourselves a target: to complete the New York City Marathon in memory of those patients who, unfortunately, are no longer among us. We want that their loss can serve to avoid future losses.
The €15,000 raised will be entirely donated to NYU. We will pay the entry free, the flights and the accommodation as our donation to the research project. We have already met several families who have lost a relative and they feel enthusiastic about the idea. It will be an honor and a privilegen for us to run this race in memory of their lost loved-ones.