CURE eUpdate Newsletter:
CURE Epilepsy
CURE eUpdate : February 2012

Letter from CUREDear friends,

We’re excited to be launching our first electronic newsletter. In addition to saving precious research dollars and other resources by “going green,” we will be able to provide you more timely updates on the exciting happenings at CURE and in the epilepsy community.

Thanks to each of you for your continued support. Without you, we couldn’t have supported Dr. Carl Faingold, whose recent breakthrough you’ll read about below. We couldn't have supported the 125 other cutting-edge projects around the world that are moving us closer and closer to the answers we are all desperate to find. We are witnessing amazing momentum in research and advocacy, with activities popping up from coast to coast.

We hope you’ll enjoy our new, monthly enewsletters. If you have an update you’d like to tell us about, please email us at We can’t wait to share with you the progress we plan to enjoy this year in the search for a cure!

With warm wishes,
Susan Axelrod


What’s Happening at CURE

CURE on Forum

Chair Susan Axelrod Speaks Out on Public Radio
On February 3rd, CURE Chair Susan Axelrod joined Dr. Daniel Lowenstein (Director of the Epilepsy Center and Professor and Vice Chairman of the Department of Neurology at University of California, San Francisco), Lisa Lindahl (member of the Business Advisory Board of the Epilepsy Therapy Project and a lifelong sufferer of epilepsy), and Warren Lammert (Chairman and co-founder of the Epilepsy Therapy Project) on KQED Public Radio’s program “Forum.” The hour-long segment gave the panelists a chance to talk about the state of epilepsy research and treatment, as well as to field questions from callers.
[Listen Now]

CURE in San Francisco

Scientists Come Together to Discuss Research Strategy
CURE’s new Senior Research Advisor, H. Steve White, PhD, recently brought together a group of scientific leaders from around the globe to discuss CURE’s research strategy. The group met in San Francisco over two days to discuss how to better realize scientific breakthroughs and where there might be opportunities for CURE to lead the scientific community toward the ultimate goal–a cure. In addition to recommending specific scientific areas that might be ripe for breakthroughs, the group discussed different ways in which CURE should measure and track successes and failures in the grant program. There was thoughtful, lively discussion, which CURE hopes to use to develop a more directed research strategy. All participants were excited about the prospect of CURE taking on a more active role in the epilepsy research community.
[Read More]

Two New Members of the CURE Team
CURE is pleased to announce two additions to the CURE family. The dedicated work of our Scientific Advisory Board, Review Panel Members, Board of Directors and staff has ensured the success of our research initiatives to date. Through the generous support of our donors, more than $18 million has been invested by CURE in research worldwide. We have put a focus on the urgency surrounding the need for a cure, addressed critical areas of epilepsy research, and worked to raise awareness of the scope and devastation of epilepsy. At this time, as CURE embarks on a new strategic research agenda to accelerate the search for a cure, we welcome H. Steve White, Ph.D. and Julie Milder, Ph.D.
[Read More]

Your Dollars at Work

Grantee Publishes Breakthrough on SUDEP & Antidepressants
CURE grantee Carl Faingold, PhD of Southern Illinois University recently published a paper in the journal Epilepsy & Behavior in which he reports a specific class of antidepressants may reduce the risk of Sudden Unexpected Death in Epilepsy (SUDEP) in a mouse model. Some evidence has been reported regarding cardiac and respiratory mechanisms contributing to SUDEP, but to date, no prevention strategies have been proposed. This groundbreaking paper offers the first concrete evidence that the serotonin system is specifically involved in SUDEP. Selective serotonin reuptake inhibitors (SSRIs) are a class of drugs prescribed for depression, and in this study Dr. Faingold presents evidence that these drugs are effective in reducing the risk of SUDEP. This important study may eventually lead to prevention strategies in the clinic utilizing medicines that are currently available.
[Read More]

Spreading the Word

Calvin's Story
The first time I laid eyes on my son Calvin he was twenty-one hours old. He was sleeping in his isolette in the Neonatal Intensive Care Unit (NICU). His cherub face glowed round and flat like the moon atop his perfect little alabaster body. He had been born six weeks prematurely. During a fetal sonogram two weeks before he was born, my husband and I had learned that his brain was missing a significant amount of white matter. Now he was hooked up to an IV, C-PAP, and every kind of monitor amidst a cacophony of NICU alarms, buzzes, and bells.
[Read more]

What You Can Do
CURE has so many ways to get involved! Check out our website on how to host an event, share your story, or contact your local representative to express what a cure means to you.


In the News

Chicago's Hometown Hero

Chicago’s Hometown Hero
The Chicago Bears may not have made it to the Super Bowl this year as a team. However, J.T. Thomas–our new favorite player!–was there to watch with his biggest fan and new friend, 14-year-old Anthony Grandberry. J.T. surprised Anthony with tickets to the big game. Anthony has epilepsy and has tried numerous medications and brain surgery to control the seizures. J.T., who says he understands Anthony’s special needs to a point because he has a brother with autism, has been inspired by his new friend to do more. With friends, J.T. drove a van from his home in Florida, making stops at seven epilepsy treatment centers on his way to pick up Anthony in Chicago.
[Read more]

New Gene Discovered Linked with Benign Familial Infantile Epilepsy
Benign Familial Infantile Epilepsy (BFIE) has been recognized as seizures occurring in infants, without fever, that run in families. Until now, the cause has remained a mystery. Clinical researchers at the University of Melbourne and Florey Neurosciences Institute worked with molecular geneticists at the University of South Australia to identify the gene underlying BFIE. While seizures usually stop by the time children with BFIE are two years old, some go on to develop an unusual movement disorder later in adolescence. The researchers collected data from 40 families around the world and found that in families that develop the movement disorder, they carry an incorrectly formed variant of a gene called PRRT2. While the normal function of this gene is unknown, its identification provides a new tool to assist in early diagnosis of BFIE and proper treatment of the movement disorder.
[Read more]

Coast to Coast

A Memorable Night in Maine

A Memorable Night in Maine
Four years ago, Christy Shake and Michael Kolster planned a party in honor of their son Calvin's birthday. It was a modest gathering in their home, aimed at raising awareness and funds for epilepsy. In four short years, their now annual event has grown exponentially, attracting nearly 100 guests and generous support within the Brunswick, Maine community. On February 4th, guests dressed up, danced, and dedicated the night to Calvin and the quest for a cure. In addition, local restaurants donated appetizers and drinks and two local bands graciously volunteered their musical talents for the evening. Thanks to the many supporters, the event brought in more than double the donations than last year!
[Read more]

Music to Our Ears

Music to our Ears
Congratulations and much thanks to CURE friend Scott Mannis! Scott, a college student in New York City, is a very talented musician who recently celebrated the release of his first cd, a portion of the proceeds from which he is generously donating to CURE. Scott, who has epilepsy, has already garnered amazing press, appearing in Billboard Magazine! Read Scott’s write-up in Billboard, “Scott Mannis Fighting Epilepsy Through Music.” And don’t forget to check out his music!
[Read more]

Upcoming Events
Check out these great upcoming events across the country!

Upcoming Event 8th Annual Zach Kafka Memorial Hockey Game
February 25th
Morris, MN

Upcoming Event Bag a Bag for CURE
March 22nd
Andover, MA
Info: Event Details

Upcoming Event CURE 2012 San Francisco Benefit
April 17th
with Special Guest Reid Hoffman (Co-founder and Executive Chairman, LinkedIn; Partner, Greylock Partners)

Click here for more information on upcoming events

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