Partnership to Increase Critical Medical Information Available to First Responders during an Emergency; Life-Saving National Safety Service “Gives a Voice” to Young Patients Unable to Communicate during a Seizure
Oct. 23, 2015 — Alex Dalpe was a healthy baby boy. However, at four months old he suddenly developed seizures. Two months later, the seizures worsened, with some lasting nearly two hours. In his first two years of life, Alex suffered from thousands of them. At 20 months old he was diagnosed with Dravet syndrome. Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and devastating form of intractable epilepsy that begins in infancy. Individuals with Dravet syndrome face a higher incidence of Sudden Unexplained Death in Epilepsy (SUDEP) and have associated conditions, which also need to be properly treated and managed. The conditions include behavioral and developmental delays, movement and balance issues, chronic infections and more. One of the most serious aspects of Dravet syndrome is that it renders patients in the throes of a seizure, or about to be, unable to communicate.
To assist individuals and families affected by this devastating illness, Smart911, the life-saving, national safety service that gives 9-1-1 extra intelligence when responding to an emergency, has partnered with the Dravet Syndrome Foundation (DSF). Families affected by Dravet syndrome are strongly encouraged to create a Smart911 Safety Profile that lists their child’s medical conditions, medications, emergency contacts, as well as service animals. Because Dravet syndrome patients are unable to speak during a seizure, the Smart911 profile can “speak” for them, giving a 9-1-1 call taker the critical details needed to get emergency medical services to the patient as quickly as possible.
“Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, affects one in 17,000 people. We work aggressively to find a cure while assisting afflicted individuals and their families,” says Mary Anne Meskis, executive director at Dravet Syndrome Foundation. “A person with Dravet syndrome has highly specialized needs and can greatly benefit from providing 9-1-1 call takers and first responders their medical information through a Smart911 Safety Profile ahead of any emergency. We encourage the families we serve to be proactive about their emergency preparedness by signing up for Smart911 today. Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.”
The Dravet Syndrome Foundation was founded by a group of parents with the purpose of expediting research to find a cure and better treatments for their afflicted children. Its missions are to raise research funds for Dravet syndrome and related epilepsies, to increase awareness of these catastrophic conditions, and to provide support to affected individuals and families.
Through Smart911’s free Safety Profiles, citizens can provide any information they would want emergency services to have when responding to their call, such as identity of residents, medical conditions including medications taken, photos of children and pets, and location of bedrooms. Safety Profiles are kept secure and only appear when the associated phone number calls 9-1-1, allowing for a more effective and precise emergency response, saving time and lives.
“Dravet Syndrome is a devastating condition and we want to do anything we can to assist individuals and families affected by it,” saidKatharine Farrell, national marketing manager for Rave Mobile Safety, maker of Smart911. “When someone, especially a young child experiences a critical medical situation such as a seizure, time is of the essence. Smart911 is a vital tool that can help get medical attention to a patient more quickly.”
To learn more about the Dravet Syndrome Foundation, visit http://www.dravetfoundation.org/
To register for Smart911 and create your free Safety Profile, please visit: https://www.smart911.com
About Dravet Foundation
Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families. For more information, please visit http://www.dravetfoundation.org/
About Rave Mobile Safety
Rave Mobile Safety is the most trusted safety software partner, providing innovative communication software for better emergency preparedness and faster response. Used by leading education institutes, enterprises and state and local public safety agencies, the award-winning portfolio of Rave Alert, Rave Guardian, Eyewitness, Rave Panic Button, Smart911 and SmartPrepare protects millions of individuals. Rave Mobile Safety is headquartered in Framingham, MA. For more information, please visithttps://www.ravemobilesafety.com.