Chicago, IL – Nov. 1, 2017 - Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation are joining forces with a power player in the Broadway community this November to raise critically-needed funding for epilepsy research. Officially launching November 1 for National Epilepsy Awareness Month, the “My Shot at Epilepsy Challenge” is an awareness and fundraising campaign inspired by the song “My Shot” from the hit musical HAMILTON. Created by Miguel Cervantes—star of the Chicago production—and his wife Kelly, a CURE board member, the My Shot at Epilepsy Challenge proceeds will directly fund epilepsy research.
Miguel and Kelly are driven to fight for a cure because of a deeply moving personal connection to the cause. Their daughter Adelaide suffers from a severe and incurable form of epilepsy known as infantile spasms, the cause of which remains unknown.
“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” says performer and activist Miguel Cervantes. “That’s why I’m inviting everyone to join me this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.”
Through the My Shot at Epilepsy Challenge, Miguel is urging the public to follow three steps:
- Take Your Shot - Take a still photo or video striking the “My Shot pose” (arm raised in the air, with index finger pointing up)
- Donate - Make a donation at MyShotAtEpilepsy.org
- Share - Post “shots” on social media, using the hashtag #MyShotAtEpilepsy, tag friends and challenge them to participate and donate within 24 hours
“Millions of Americans are living with epilepsy,” says Susan Axelrod, Founding Chair of CURE. “This places an immense burden on these individuals, their families and society as a whole. The need to advance research efforts in this field is urgent and long overdue. We are so grateful to the Cervantes family for sharing their family’s story to help all who struggle.”
Epilepsy is a disease with a wide spectrum of severity. Three and a half million Americans, 470,000 of them children, have epilepsy. For some, it has minimal impact on daily life, but for more than a million patients, many with seizures that cannot be controlled with existing treatments, epilepsy can have significant lifelong impact on the ability to live independently and even on life expectancy. Epilepsy impacts 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined. Yet NIH funding is 60% less than funding for these other neurological diseases combined.
“This is an exciting time where advances in scientific research appear more promising. The My Shot Challenge is a great opportunity to raise awareness and promote understanding,” says Kate Carr, CEO of CURE. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will help bring attention and funds to this cause and help advance the search for answers that can transform and save lives.”
“Seizures in approximately one-third of individuals with epilepsy continue to be uncontrolled today – with no significant difference in patient outcomes in over 50 years,” says Philip Gattone, President and CEO of the Epilepsy Foundation. “That means, every year, millions of individuals and families suffer devastating impact, including the immeasurable pain of thousands of lives lost. Through the ‘My Shot at Epilepsy Challenge’, Miguel and Kelly Cervantes courageously offer new hope and inspiration that by coming together, we will discover new therapies and research that will end epilepsy once and for all.”
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About CURE
Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. It was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. CURE is dedicated to the goal of “No seizures. No side effects. End epilepsy.” CURE works relentlessly to find a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. CURE has the distinction of being a 4-star charity on Charity Navigator, the highest award, recognizing sound fiscal management and commitment to accountability and transparency. For more information on CURE, please visit www.CUREepilepsy.org.
About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with over 50 local organizations throughout the U.S., 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 lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. 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 epilepsy.com. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP.
source: Epilepsy Foundation press release
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