CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eUpdate : March 2012
CURE

Letter from CUREDear Friends,

When our daughter Savannah was two, she had her first seizure. At six, it became painfully clear that her seizures, which she now had dozens of times a day, were not going to stop. At ten, we had exhausted all rational treatment options, so began to try irrational ones—medications not known to help her seizure types; holistic therapies. Now at eighteen, after sixteen years of unrelenting seizures that have battered her brain and left her severely intellectually disabled, our only hope lies in research for a cure. And we are not alone. One in three people with epilepsy have intractable seizures like Savannah. We must find a cure.

In the six years that I’ve worked with CURE, my hope has grown. I’ve seen such amazing progress within CURE, but also in the scientific and advocacy communities because of CURE. CURE has helped shape this new landscape, and the momentum in the community is palpable. And while the task ahead of us seems insurmountable, I am reminded of how far we have come. With each year, we are one step closer to finding a cure for this horrific disorder. CURE is my hope.

Tracy Dixon-Salazar, PhD
CURE Research Review Board
Read Tracy’s story

CURE

What’s Happening at CURE

Join CURE at the National Walk for Epilepsy

Join CURE at the National Walk for Epilepsy
Thousands of people will come together in Washington, DC on Saturday, March 31, 2012 for the 6th annual National Walk for Epilepsy. Join CURE’s team! Together, we can raise awareness of this devastating disease and work toward a future without epilepsy.
[Email to join]


Your Dollars at Work

CURE Grantee Receives Prestigious NIH Award
Scott Baraban, PhD at the University of California-San Francisco recently received an NIH EUREKA grant to continue research supported by his 2011 Scott BarabanCURE Challenge award. The National Institute of Neurological Disorders and Stroke (NINDS), one of the centers at the National Institutes of Health, offers funding for exceptional, unconventional research enabling knowledge acceleration (EUREKA) in the epilepsies. These grants are highly competitive and awarded to investigators whose projects promise to have substantial impact on the field. Dr. Baraban’s research focuses on establishing a drug discovery program utilizing a fish model of Dravet Syndrome. He hopes that this new method of high-throughput cost-effective drug screening will advance new therapies to the clinic more quickly. Congratulations to Dr. Baraban!

Upcoming Conferences
CURE is dedicated to supporting exciting, innovative science that will one day help us reach our goal: a cure. One way in which we can further the field is through the sponsorship of scientific conferences. CURE is proud to support conferences around the globe that are working to bring the brightest minds together to discuss some of our biggest and most important issues. Check out the conferences we are supporting in the coming months:

Upcoming Conference CURE-Sponsored
Biology of the Epilepsies: From Molecules to Prevention and Cure
A workshop focused on new concepts and new and old controversies
May 3-6, 2012
Asilomar, California

Upcoming Conference CURE-Sponsored
Partners Against Mortality in Epilepsy Conference
June 21-24, 2012
Chicago, Illinois
Conference Details

Upcoming Conference CURE-Sponsored
Mechanisms of Epilepsy & Neuronal Synchronization Gordon Conference
August 19-24, 2012
Waterville Valley Resort
Waterville Valley, New Hampshire
Conference Details

Upcoming Conference CURE-Sponsored
AES/ILAE Joint Workshop to Optimize Preclinical Epilepsy Therapy Discovery
September 28-29, 2012
London, UK

More info: www.cureepilepsy.org/conferences


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.

San Fran 2012

Chicago 2012

 

In the News

Major Epilepsy Report to be Released

Major Epilepsy Report to be Released
The Institute of Medicine (IOM) is set to publish its report, The Public Health Dimensions of the Epilepsies, Friday, March 30th. The culmination of a year-long study, the highly anticipated report will highlight areas including health care and human services, health literacy, and education. The IOM will recommend priorities in these areas to better understand the public health impact of the epilepsies, and to meet the needs of people with epilepsy and their caregivers. CURE is proud to be one of several key sponsors of the IOM report. The public release on March 30th will be at the Keck Center of the National Academies, 500 5th Street, NW, Washington, DC at 10am.
[Read more]

An Addition to the Salazar Family

An Addition to the Salazar Family
Eighteen-year-old Savannah Salazar, daughter of CURE Research Review Board member Tracy Dixon-Salazar, PhD, will soon have a new friend to stand by her side: a specially trained seizure service dog. Savannah and her family recently attended a ceremony at Camp Pendleton, where sponsors announced that she would be matched with a dog from Canine Assistants (sponsored by UCB Pharma) this year. Tracy says that she expects the dog to improve her daughter’s quality of life once the family undergoes the requisite two weeks of training before the dog is placed in their home. “What the dog will be great for is offering her some independence,” stated Tracy. "You can imagine, someone who has seizures every day... can’t be left unattended... She gets tired of mom and dad hovering, as any 18-year-old would." The dog will be specifically trained to get help when Savannah has a seizure.
[Read more]


Coast to Coast

Hitting the Pool for CURE

Hitting the Pool for CURE
On February 18, Charlie Mavon and Jeffrey Vitek organized a swim-a-thon, or “Hugh-a-thon” as they called it, in honor of their friend Hugh O’Donnell. Motivated by Hugh, who has epilepsy, Charlie and Jeffrey wanted to raise funds for CURE and decided to take in pledges for each lap of the pool they swam. All on their own, they devised a plan and went door to door for donations. Prior to the event, these devoted and inspiring young champions were hoping to raise $500. Through their sheer perseverance, swimming more than 90 laps of the pool, they have raised an amazing $4,000 and counting!
[Read more]

Remembering Zach

Remembering Zach
On February 25, Dan Kafka organized the 8th Annual Zach Kafka Memorial Hockey Game to celebrate his son Zach’s life. Dan organizes this event every year to raise awareness of epilepsy and SUDEP, from which Zach passed away in 2004. Zach’s former teammates joined in, playing for their friend and to raise money to benefit CURE.
[Read more]


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

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

Upcoming Event 9th Annual Kyle’s Running for a Memory 5K Run/Walk
March 24th
Pittsford, NY
Info: Event Details

Upcoming Event Webtab, Inc. Charity Event – to benefit CURE
April 18th
Info: Event Details

Upcoming Event S4 Walk, Dinner and Silent Auction
June 9th
Southbury, CT
Info: Event Details

Click here for more information on upcoming events

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