UPDATE (7-12-14 at 12:29 am ET): We just passed our $90,000 goal for the SAMi Indiegogo Campaign. THANK YOU to all our contributors who have helped us fund the next stage in this exciting new innovation for families of children living with difficult seizures. We are very proud to be supporting a community of dedicated families and friends who share the Epilepsy Foundation's passion and commitment. The Foundation is your unwavering ally to help bring new therapies and innovations to people living with epilepsy and seizures in a timeframe that matters. Please continue to visit epilepsy.com for more updates on SAMi and other innovations to help our community. Once again, THANK YOU!!
LANDOVER, MD - The Epilepsy Foundation released a video today 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 (https://www.indiegogo.com/projects/epilepsy-foundation-sami) 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.
UPDATE: As of mid-afternoon on July 10, 2014, 16 Epilepsy Foundation Affiliates have supported the SAMi campaign by donating $399 each. We thank them for being indiegogo campaign supporters for new innovations.
- Epilepsy Foundation of New Jersey
- Epilepsy Foundation of Greater Chicago
- Epilepsy Foundation of Long Island
- Epilepsy Foundation of Greater Cincinnati and Columbus
- Epilepsy Foundation of Central & South Texas
- Epilepsy Foundation Louisiana
- Epilepsy Foundation Colorado
- Epilepsy Foundation Kentuckiana
- Epilepsy Foundation of Western and Central Pennsylvania
- Epilepsy Foundation of Greater Los Angeles
- Epilepsy Foundation of Missouri and Kansas
- Epilepsy Foundation of Michigan
- Epilepsy Foundation of Idaho
- Epilepsy Foundation of Indiana
- Epilepsy Foundation of Arizona
- Epilepsy Foundation of Metropolitan New York
- Epilepsy Foundation of Eastern Pennsylvania
When a person has two or more unprovoked seizures, they have epilepsy, which affects more than 2 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.