Citizens United for Research in Epilepsy

Citizens United for Research in Epilepsy
Founded September 8, 1998[1]
Legal status 501(c)(3) nonprofit organization
Headquarters Chicago, Illinois
Coordinates Coordinates: 41°53′39″N 87°38′23″W / 41.8941494°N 87.6397273°W / 41.8941494; -87.6397273
Services Issues of grants to fund research for a cure for epilepsy, and increases awareness about epilepsy.
Robin Harding[2]
Susan Axelrod[2]
Gardiner Lapham [2]
Revenue (2013)
 $4,809,202[2]
Expenses (2013) $4,530,617[2]
Employees (2013)
 14[2]
Volunteers (2013)
 370[2]
Mission To find a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.[2]
Website www.cureepilepsy.org

Citizens United for Research in Epilepsy, sometimes referred to by its initials CURE, is a non-profit organization based in Chicago, Illinois.

Established on September 8, 1998,[1] CURE is focused on raising awareness and funds for research targeting a cure for epilepsy.[2]

History

Citizens United for Research in Epilepsy was founded through a grassroots effort by parents who were frustrated by their helplessness in protecting their children from the devastating effects of epilepsy and seizures and by the limited treatment options available for those suffering from the disease. In 1998, President Susan Axelrod established the organization with the mission of finding a cure and raising public awareness. Since its inception, CURE has helped to increase federal attention and funding for epilepsy research. Additionally, CURE has raised $20 million to fund research and other initiatives that will lead the way to a cure. CURE funds seed grants to young and established investigators to explore new areas of research and collect the data necessary to apply for further funding by the National Institutes of Health (NIH) and has provided seed grants to 134 innovative studies.

Citizens United for Research in Epilepsy has also worked to establish epilepsy as a disease that receives crucial funding support for research through the United States Department of Defense for its program entitled “Prevention of Epilepsy after Traumatic Brain Injury.” For many soldiers suffering Traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

Through its focus on raising funds for research, the national ad campaign first released in Parade Magazine, Citizens United for Research in Epilepsy is increasing public awareness about the prevalence and devastation of epilepsy. In addition, Melora Hardin, best known for her appearances in The Office, Hannah Montana: The Movie, and Seventeen Again, has lent her voice to the millions suffering from epilepsy in CURE’s public service announcements, which are running nationwide. CURE has enjoyed extensive media coverage, as well. President and co-founder Susan Axelrod has appeared on the TODAY Show, MSNBC’s Morning Joe, in a special segment on 60 Minutes with Katie Couric, Fox News, Andrea Mitchell Reports, CNN with Campbell Brown, and Piers Morgan Tonight. In addition, the February 15, 2009, PARADE Magazine cover story, “I Must Save My Child,” shared Axelrod and her family's experience with epilepsy and why Citizens United for Research in Epilepsy was founded. In their April 20, 2009 edition, Newsweek published a cover package, “The Mystery of Epilepsy: Why we must find a cure,” highlighting stories from CURE families. Axelrod contributed an essay, and Board member Gardiner Lapham was also featured.

Axelrod has been recognized internationally for her advocacy. Honors have included awards from Washington, DC-based Research!America, the Child Neurology Foundation, and the American Epilepsy Society. Most recently, she was named Chicagoan of the Year by Chicago Magazine and recognized as an Ambassador for Epilepsy by the International League Against Epilepsy and the International Bureau for Epilepsy.

CURE has been named a top-rated charity by Charity Navigator—America’s largest and most trusted independent evaluator of charities. Due to the passion and generosity of families, friends, and volunteers, over 92 cents of every dollar goes directly to support these critical research and awareness programs.

Mission

The mission of CURE is to increase public awareness of the nationwide prevalence and devastation of epilepsy and to increase funding to provide grants for research designed to find a cure for epilepsy. CURE's vision is a future in which the millions of children and adults with epilepsy no longer have their lives defined by life-altering and life-threatening seizures.

Leadership

Founder and President Susan Axelrod established CURE in 1998 and continues her advocacy efforts for a cure at their offices located in Chicago, IL. CURE is additionally supported by an honorary board of directors, including its Chairman, U.S. Senator Herb Kohl . Randy Siegel serves as a Board member.

Events

As part of its efforts to increase funds and awareness for epilepsy, CURE hosts and co-sponsors a number of benefits throughout the year. Each year, the Citizens United for Research in Epilepsy hosts its Annual Benefits in Chicago specifically targeted toward finding a cure for epilepsy, an event which has over the years drawn such noteworthy keynote speakers as President Barack Obama (2005), former First Lady Hillary Rodham Clinton (1999 and 2003), President Bill Clinton (2001), Meet the Press Host Tim Russert (2007), U.S. Senator Richard Durbin (2008), Chief Washington Correspondent for ABC news George Stephanopoulos (2008), former “Nightly News” anchor Tom Brokaw (2009), national political consultant David Axelrod (2008 and 2009), former CBS Evening News anchor Katie Couric (2010), Vice President Joe Biden (2011), and Grammy Award-winning singer/songwriter Carole King (2012).

Additionally, Citizens United for Research in Epilepsy was the recipient of The 2008 Northwestern University Dance Marathon Award.

On October 25, 2009, 60 Minutes featured a segment on epilepsy and CURE. Katie Couric interviewed the Axelrod family about their struggle with epilepsy as well as the dire need for focus on epilepsy research.

References

  1. 1 2 "Citizens United for Research in Epilepsy". Corporation File Detail Report. Illinois Secretary of State. Accessed December 8 ,2015.
  2. 1 2 3 4 5 6 7 8 9 "Form 990: Return of Organization Exempt from Income Tax". Citizens United for Research in Epilepsy. Guidestar. December 31, 2013. Accessed December 8, 2015.

External links

External links

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