SOURCE: Epilepsy Foundation

Epilepsy Foundation

July 07, 2014 13:06 ET

VIDEO: Mother of Child Living With Severe Epilepsy Meets Creators of Life Changing Device

SAMi Sleep Activity Monitor Helps Provide Safety and More Control to Families Living With Epilepsy and Seizures; Epilepsy Foundation Indiegogo Campaign, Ending July 11th, Will Make SAMi More Accessible

LANDOVER, MD--(Marketwired - July 07, 2014) - The Epilepsy Foundation released a video today (http://youtu.be/_TxR0JTLTqk) uniting the mother of a child with epilepsy with the makers of a sleep activity monitoring device that helped her and her family gain more control in being able to respond if her child has potentially dangerous seizures at night.

Anna Burriesci's daughter Grace, age 2, was diagnosed with Dravet Syndrome, a severe form of epilepsy, a few days after her first birthday in April, 2013. Grace has potentially dangerous seizures while she sleeps. The Burrieschis received the sleep activity monitor, called SAMi, as a gift from the Epilepsy Foundation of Colorado.

Charles and Cynthia Anderson, who have a son, James, living with epilepsy, are the creators of the SAMi device, which won the Epilepsy Foundation's 2012 Shark Tank Award for most innovative new idea to help people living with epilepsy.

The Epilepsy Foundation's first Indiegogo campaign (http://www.samialert.com/ef) will help build a more streamlined version of the SAMi device and make it more accessible to the larger epilepsy community.

 "Only a parent of a child with epilepsy can truly understand the worry that you have," Anna said. After talking about the immediate benefits the family is seeing using SAMi, Anna added, "SAMi will help us in the future as Grace gets older and wants to be independent. I know she won't want to sleep with mom every night. I feel I will be using SAMi for a long time. It is just an amazing tool."

"We know what [Anna's] feeling," said Cynthia Anderson. "We understand the panic of thinking you won't be there at the right time… that your child will need you when you won't be there. When we first created SAMi, we thought our son and our situation was unique, but we found out we were not alone. Charles developed the SAMi monitor because I wasn't sleeping and James' seizures were worsening."

Participants in the video presentation include:

  • Gail Pundsack, executive director of the Epilepsy Foundation of Colorado
  • Anna Burriesci, mother of a child living with epilepsy and user of the SAMi Device
  • Cynthia Anderson, mother of a son living with epilepsy and co-creator of SAMi
  • Charles Anderson, father of a son living with epilepsy and co-creator of SAMi
  • Kenneth Lowenberg, vice president of communications and digital strategy of the Epilepsy Foundation, moderated the discussion. 

About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy, which affects more than 2 million people in the United States and 65 million people worldwide. This year, another 150,000 people in our country will be diagnosed with epilepsy. Despite all available treatments, four out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.

About the Epilepsy Foundation of Colorado

The Epilepsy Foundation of Colorado is a 501(c)(3) public charity whose mission is to lead the fight to stop seizures, overcome the challenges created by epilepsy, and find a cure. The Foundation's services are available to more than 50,000 Coloradoans living with epilepsy and their families. All programs are free or offered at a low cost with scholarships available.

About the Epilepsy Foundation

The Epilepsy Foundation, a national non-profit with 48 affiliated organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is to stop seizures and sudden unexpected death in epilepsy (SUDEP), find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit www.epilepsy.com.

"Like" the Epilepsy Foundation on Facebook at www.facebook.com/epilepsyfoundationofamerica and follow us on Twitter at www.twitter.com/epilepsyfdn

Contact Information

  • CONTACT:
    Kenneth Lowenberg
    Vice President of Communications and Digital Strategy
    301.918.3773
    klowenberg@efa.org