CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eUpdate : May 2012
CURE

Letter from CUREDear Friends,

I am delighted to be writing this month’s letter. It’s such an honor to be the one to share the news that Sharon O’Keefe has joined CURE’s Board of Directors.

Sharon is a nationally recognized authority on hospital operations, health care quality, patient satisfaction and employee engagement. In 2011, she was named President of the University of Chicago Medical Center, a leading national academic medical institution.

Having worked in health care for more than three decades, she brings an incredible breadth of knowledge and experience to the Board. She began her health care career as a critical care nurse, and soon advanced into more administrative roles. She has worked with basic and clinical researchers and currently serves on the National Institutes of Health Advisory Board for Clinical Research.

Sharon’s commitment to health care is outstanding and her excitement about the opportunity to advance epilepsy research is inspiring. She will bring wonderful insight to the organization, especially at this critical juncture where we seek to expand our research portfolio and accelerate progress toward a cure.

Please join me in welcoming Sharon, her husband Hal Moore, and daughter Mackenzie to our CURE family!

Gardiner Lapham
Chair, Governance Committee

CURE

What’s Happening at CURE

CURE Welcomes Sharon O’Keefe
CURE is pleased to welcome Sharon O’Keefe to the Board of Directors. Sharon is President of Sharon O'Keefethe University of Chicago Medical Center, where she oversees a $1.1B clinical enterprise and connects the patient care missions of the medical center with the research and education missions of the University of Chicago Biological Sciences Division. Sharon has a lifetime passion for improved healthcare and is a recognized leader in hospital operations, health care quality, patient satisfaction, and employee engagement.
[Read more]

CURE Rocks the West Coast

CURE Rocks the West Coast
On April 17th, hundreds of guests from near and far gathered at the Four Seasons in San Francisco for CURE’s 2nd Annual San Francisco Benefit, chaired by Evelyn Nussenbaum and Fred Vogelstein. Kicked off by this year’s emcee, Atlanta Falcons All-Pro Tight End Tony Gonzalez, the event welcomed LinkedIn co-founder and Executive Chairman Reid Hoffman as special guest, CURE Rocks the West Coastthe Honorable Willie Brown as auctioneer, and the LA band He’s My Brother She’s My Sister as musical guests.

The night also honored two CURE stars for their work. Tracy Dixon-Salazar, PhD was presented with the 2012 CURE Heroism Award. Tracy, whose daughter Savannah suffers from epilepsy, pursued a college degree and then a doctorate so that she could personally be one of the researchers working diligently to find a cure for this devastating disease. In addition, sixth grader Taylor Beasley was honored. Taylor, recently diagnosed with epilepsy, single-handedly raised over $13,000 for the event. And she's not stopping now! Taylor has convinced her school to include CURE as one of the organizations that will benefit from an upcoming charity walk.

CURE extends very special thanks to Evelyn Nussenbaum and Fred Vogelstein for bringing together such a spectacular event! We can’t wait for next year’s!

[See photos from the event]

White House Correspondents’ Brunch

White House Correspondents’ Brunch
On April 28th, CURE friend Tammy Haddad hosted yet another star-studded White House Correspondents’ Garden Brunch. Hollywood actors, politicians, and journalists flocked to the Brunch, of which CURE was a beneficiary. In addition, Chair Susan Axelrod was honored at the brunch with AOL’s Steve and Jean Case. Thanks to Tammy and her co-hosts, awareness of CURE and epilepsy was heightened in an entirely new audience.
[See pictures]

The Cat on the Windowsill
After watching loved ones struggle with epilepsy, sixteen year old Megan Asrani decided she had to The Cat on a Windowsilltake action. In the hopes of breaking the stigma often associated with epilepsy, Megan wrote and illustrated the children’s book, The Cat on the Windowsill. The book chronicles the unlikely bond formed between a young patient, Elly, at the Children’s Hospital and her feline friend. It will be available for purchase in early summer and all proceeds will be donated to Epilepsy Foundation of Northern California and CURE. To learn more, and help Megan reach her $10,000 goal, visit: www.projectbutterfly.us.

One More Thing...
Check out the CURE website’s awesome new design! Special thanks to our designer Curt Silvers for the fresh look!


Chicago 2012

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.

 

Coast to Coast

Eat Your Heart Out!

Eat Your Heart Out!
In Ames, Iowa, Flor Lizette Hoffman hosted Eat Wings-Raise Funds Event. The fundraiser, held on April 16, was in honor of her daughter Aliyah who was diagnosed with Infantile Spasms and Lennox-Gastaut Syndrome when she was just 29 months old. The event partnered with Buffalo Wild Wings to donate 10% of all food sales to CURE. Additionally, many local businesses chipped in great items for the silent auction. All proceeds will help to fund CURE’s Infantile Spasms Research Initiative.
[Read more]

Kicking for a Cure

Kicking for a Cure
On Friday, April 20th, the Rutgers University Scarlett Knights Women’s Soccer Team played a fundraising game in honor of epilepsy awareness and research. Paige Alexander led the planning efforts on behalf of her fellow teammate Sara Corson, who was recently diagnosed with epilepsy. Sara’s positive attitude and perseverance has galvanized the whole team to get involved to find a cure!

Calling All Athletes
Partner with CURE on your next race, walk, ride or climb to help fund epilepsy research. For more information, please email Kris at kris@CUREepilepsy.org.


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]

CURE Launches New Infantile Spasms Grant Program
CURE is excited to announce a new, directed research initiative focused on advancing understanding of infantile spasms. Infantile spasms is a rare childhood epilepsy syndrome that can have profoundly negative long-term developmental and cognitive consequences. Disease onset is typically between 3-7 months of age, and many children develop other seizure syndromes as they age. Infantile spasms is characterized by hypsarrhythmia on the EEG, a developmental feature unique to this syndrome. Importantly, a strong correlation has been noted between the presence of hypsarrhythmia plus spasms and cognitive and developmental delays.

The most common treatments include hormones, steroids, or antiepileptic drugs. Unfortunately, there remains a lack of consensus regarding the best initial therapeutic approach. Complete control of spasms can lead to an improved long-term outcome; however, currently available treatments are not always effective and are often associated with substantial adverse effects. As such, CURE is launching a new, directed grant program to accelerate the understanding of infantile spasms and advance a new, disease-modifying therapy into the clinic.

[Read more]

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

Upcoming Event David Acevedo A True Ironman Fundraiser
Saturday, May 19, 2012
Memorial Hermann Texas Ironman 2012
The Woodlands, Texas
Info: Event Details

Upcoming Event Anna's C.U.R.E. Epilepsy 5K Run and Fun Walk
Monday, May 28, 2012, Memorial Day
Frederick, Maryland
Info: Event Details

Upcoming Event Art from the heART
Saturday, June 2, 2012
Los Angeles, CA
Info: Event Details

Upcoming Event S4 Walk, Dinner and Silent Auction
Saturday, June 9, 2012
Southbury, CT
Check out the amazing silent auction items, including private tours at baseball stadiums across the country! Bidding is open to the public starting June 1st!
Info: Event Details

Upcoming Event Stop the Eruption Fundraiser
Friday, June 15, 2012
Mt. St. Helens
Skamania County, WA
Info: Event Details

Click here for more information on upcoming events

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