CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eUpdate : April 2012
CURE

Letter from CUREDear Friends,

I’m excited about April 17th, the night of CURE’s 2nd Annual San Francisco Benefit, at the Four Seasons Hotel. LinkedIn co-founder and Executive Chairman Reid Hoffman will speak; California political legend Willie Brown will conduct our live auction, and the L.A. cult band He’s My Brother She’s My Sister will perform. And, of course, Susan and David Axelrod will be there.

But what I’m really looking forward to is the look on Taylor Beasley’s face. Because Taylor, who is 12 and recently diagnosed with epilepsy, is one of the reasons it’s going to be a success. To date, she has sold nearly $13,000 worth of tickets, and she’s still at it. Next, she’s going to help make the centerpieces. And she is inspiring me. Every time I get grumpy about dealing with tablecloth colors and schedules, Taylor’s work and energy remind me, again, of why I work with CURE. I want her to see what a beautiful evening she helped create. And I want to raise as much money as possible to help find a cure for her and everyone else affected by epilepsy.

Evelyn Nussenbaum
Chair, 2012 San Francisco Benefit for CURE

CURE

What’s Happening at CURE

CURE Joins National Epilepsy Walk

CURE Joins National Epilepsy Walk
Thousands of people from all over, whose lives are either personally or professionally affected by epilepsy, came together in Washington, DC on Saturday, March 31 for the 6th annual National Walk for Epilepsy. For the first time, a CURE team joined the walk to raise awareness of this devastating disease. Board members Susan Axelrod and Jeanne Donalty and CEO Carmita Vaughan walked with a great group of CURE friends, and were inspired by the astounding crowd gathered. We hope even more of you can join us next year!

A Big CURE Welcome to Bogdan Ewendt!
CURE is pleased to welcome Bogdan Ewendt as our Director of Finance and Administration. In addition to a wealth of experience in finance, accounting, and small business turnarounds, he also has a personal connection to epilepsy, which fosters deep commitment to our mission. We’re thrilled to have him on our team!

CURE’s Hiring!
CURE is offering a position in the reshaped role of Director of Development. The position provides an opportunity for a challenging and rewarding career within a growing national organization based in Chicago. If you or someone you know is interested, please take a look at the opportunity guide for this position.
[Download the position description]

CURE Is on Pinterest
CURE is now on Pinterest, the popular and quickly growing social networking site that allows users to organize and share things of interest to them that they find on the web. Are you on Pinterest? Follow CURE’s Boards, and pin us!


Your Dollars at Work

PAME 2012

CURE to Co-sponsor Conference on Mortality in Epilepsy
CURE is proud to co-sponsor the upcoming Partners Against Mortality in Epilepsy (PAME) conference, which will be held in Chicago June 22-24. This three-day event will predominantly focus on research related to Sudden Unexpected Death in Epilepsy (SUDEP). While SUDEP is the leading cause of mortality associated with epilepsy, it has only started to receive attention in the last 10-12 years. CURE was proud to initiate the first grant program to specifically challenge the scientific community to study SUDEP in 2009. Since then, CURE has funded seven grants dedicated to elucidating the underlying mechanisms responsible for SUDEP. This inaugural PAME conference indicates a growing interest in SUDEP and the recognition that it is a problem that needs to be solved. For more information on the conference, please visit the website.
[Read more]


Upcoming Events

San Fran 2012

S4 2012

Chicago 2012

 

In the News

Major Epilepsy Report to be Released

Institute of Medicine Releases Report on the Public Health Dimensions of Epilepsy
On March 30, the Institute of Medicine released a landmark report on the public health aspects of epilepsy. Titled Epilepsy across the Spectrum, the report seeks to emphasize the varied nature of epilepsy and the many seizure disorders. In addition, the report communicates the importance of good surveillance data, as the current estimates of epilepsy prevalence and incidence are not based on solid data. What is clear is that epilepsy is a very common disorder, more common than most people believe, and vastly underfunded.

Highlighted throughout the report are recommendations around better surveillance, access to health care, coordination of services, and education of both the public and health professionals. CURE is proud to be one of a large number of groups who came together to co-sponsor this report. While it did not address the state of biomedical research in epilepsy, the hope is that the recommendations that have come out of the report will improve public awareness and motivate the community to take some crucial steps forward.
[Read the full report]

Department of Defense Funds Two Epilepsy Grants
The Department of Defense began a Peer Reviewed Medical Research Program in 1999 to support research across science and medicine. For this year, congress allocated $50 million for research in 21 different topic areas, one of which is epilepsy. CURE is pleased to note that in this year’s pool of funded proposals are two projects on epilepsy, and both are former CURE grantees! One of the Discovery Awards has been granted to Jeff Goodman, PhD, of the Research Foundation for Mental Hygiene. Additionally, Detlev Boison, PhD, of the Legacy Research Institute was granted an Investigator-Initiated Research Award. Congratulations to Dr. Goodman and Dr. Boison on the continued success of their research programs!


Coast to Coast

Bag a Bag for CURE

Bag a Bag for CURE
On Thursday, March 22, guests in Andover, MA flocked to Temple Emanuel to update their styles for spring, all while raising money and awareness for CURE! Linsey Goldman hosted the Bag a Bag for CURE to honor her seven year old son Benji, who has epilepsy. Sponsored by Shift Your Style and Sisterhood of Temple Emanuel, guests learned how to update their wardrobes for spring by shopping in their own closets. Everyone was invited to donate their gently used handbags. A silent auction featuring designer handbags also helped complete their new looks. Guests walked away with new looks, as well as more information on epilepsy and CURE!

Running for a Memory

Running for a Memory
Every year, Donna and Dennis Coggins rally the community of Pittsford, NY to memorialize the life of their son Kyle, who passed away in May 2003 of SUDEP. Now in its ninth year, Kyle’s Running for a Memory 5K Run/Walk is a much-anticipated event. The race, this year held on March 24, benefits Kyle’s Benevolent Fund, which is donated to CURE to fund desperately needed research.

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.

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