CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eUpdate : July 2012
CURE

Letter from CUREDear Friends,

I have the pleasure and the honor of writing this month’s letter as the newest member of the CURE Board of Directors.

Not many of us have the chance to integrate our personal and professional lives, but working with this dynamic and vital organization provides me that chance. As the parent of a daughter with epilepsy, I have seen firsthand how seizures can disrupt the life and plans of those who suffer from them and their families. Having worked in health care for 30 years, and now as President of the University of Chicago Medical Center, I have witnessed the great strides made by the medical and scientific communities to unravel epilepsy’s causes. However, while we have seen advances, there is much more that needs to be learned. My hope is to combine my personal experiences and professional knowledge to assist CURE in achieving their mission and vision.

Together, we can help CURE expand its research efforts and accelerate our progress toward a cure. We also can be powerful advocates in raising public awareness of the incidence of epilepsy, and its cost and impact on overall quality of life. I look forward to working with all of you on these issues not just as a board member, but as a member of the CURE family.

Sharon O’Keefe
Board Member

CURE

What’s Happening at CURE

CURE Hosts Most Successful Benefit Ever!
On June 15th, over 800 supporters, including many local and state dignitaries, gathered at Chicago’s Navy Pier for CURE’s 14th Annual Benefit, chaired by the Honorable William M. Daley. The night was an astounding success, raising more than $1 million—the most ever raised by a CURE event.

This year’s benefit had a different tone thanks to Grammy Award-Winning Singer/Songwriter Carole King, who gave a special and incredibly memorable performance. Ms. King’s encore number, "You’ve Got a Friend," moved the entire audience to sing Hugh-a-Thonalong. It was clear that CURE has many, many friends, and we thank all who supported this wonderful night!

One of the most inspiring moments of the night came when CURE Award of Excellence honorees, sixth graders Charlie Mavon, Hugh O’Donnell, and Jeffrey Vitek spoke about the swim-a-thon (or “Hugh-a-thon” as they named it) that they organized to honor Hugh, who has epilepsy. There were very few dry eyes in the house as we listened to their moving—and self-written—remarks. (You can read all about their story here and watch the video of the speech here.) Charlie, Hugh, and Jeffrey’s speeches–which earned a standing ovation!– lead right into a paddle raise. Because of their inspirational story, we raised over $200,000 right then and there!

Special thanks to Ms. King, Mr. Daley, the Dinner and Planning Committees, and all those who gave their time, energy, and donations to this benefit. It was truly a momentous occasion for CURE and for epilepsy research.

[See photos from the event]

Leaders in Epilepsy and Autism Gather for Groundbreaking Workshop
For the first time, leaders in the fields of epilepsy and autism came together to discuss how to work collaboratively to combat these devastating disorders. Sponsored by the National Institutes of Health, with support from CURE and Autism Speaks, researchers and clinicians gathered for two days to share data, experiences, and ideas for potential collaboration. While the data is incomplete, studies suggest that up to 30% of children with an autism spectrum disorder will suffer at least one seizure. The data in epilepsy is less clear, but there are certain syndromes (such as infantile spasms) that are associated with an increased risk for developing autism spectrum disorders. It is evident that there is a link between these disorders, and that the research and clinical communities need to work together. Over the course of the two-day workshop, data was presented on epidemiology, neurophysiology, genetics, and how these patient populations should be studied in clinical trials. Most importantly, ideas were exchanged, and a new partnership was forged in the search for common mechanisms underlying both epilepsy and autism.

Bogdan Ewendt Named CURE Interim Executive Director
CURE is pleased to welcome Bogdan Ewendt as the new Interim Executive Director. Bogdan brings years of management experience to the role. During his career, he has worked in many different industries from teaching at community colleges to serving as President/CFO of a mergers and acquisitions firm. Perhaps best described as a turn-around specialist, Bogdan’s diverse career experiences have taken him in many directions. Now he’s following his heart. Bogdan’s daughter has battled epilepsy since 1982. He is pleased to be using the benefits of his career experience for a cause that is incredibly important to him and his family.
[Read Bogdan's bio]

Your Dollars at Work

Scientific Advisory Board Meets to Make Funding Recommendations
The CURE Scientific Advisory Board (SAB) came together in Chicago for two days, joined by several members of the staff and Board of Directors, to discuss all of the great science proposed in this most recent cycle. Over the course of the meeting, grants were discussed for the Challenge, Multidisciplinary, Prevention of Acquired Epilepsy, and SUDEP award categories. Additionally, we took full advantage of having the SAB members in one room to discuss where CURE should be headed with research funding priorities. They provided some wonderful new ideas for the road ahead. We look forward to officially announcing our new batch of stellar grantees very soon, so stay tuned!

CURE Grantees Publish Breakthrough on Ketogenic Diet Mechanisms
A new study published in the May 24th issue of Neuron reveals a potential mechanism underlying the protective effects of the ketogenic diet, a high fat – low carbohydrate diet that is prescribed to treat medically resistant seizures. While the ketogenic diet has been used for nearly a century, its underlying mechanisms have remained elusive. 2010 CURE Challenge award recipients Gary Yellen, PhD, of Harvard Medical School, and Nika Danial, PhD, of the Dana-Farber Cancer Institute have proposed an answer, linking resistance to seizures to a protein that modifies cellular metabolism in the brain called BAD. Dr. Yellen had hypothesized that the ketogenic diet worked because ketone bodies provide neurons enough fuel for normal function, but when a seizure hit, the activated ATP-sensitive potassium (KATP) channels could shut the seizure off. Working in genetically altered mice, they found strong evidence that a BAD-KATP pathway conferred resistance to epileptic seizures. The findings make the BAD protein a promising target for new epilepsy drugs, taking the field one step closer to finding a pharmacological substitute for the diet.
[Read more]

Landmark Meeting on Epilepsy Mortality
By Gardiner Lapham, CURE Board; PAME Meeting Chair

As a mother who lost a child to epilepsy, I am buoyed by the success of the recent Partners Against Mortality in Epilepsy (PAME) meeting and likewise encouraged by the dramatic gains that have been made to advance science and to create a community that will foster change.

This first-ever PAME meeting was held June 21-24, in Evanston, IL, and was a 2.5 day learning event focused predominantly on Sudden Unexpected Death In Epilepsy (SUDEP), which claims thousands of lives each year in the US and has been poorly understood, overlooked and, until recently, dramatically underfunded.

The meeting boldly united scientists and clinicians from across disciplines, people living with epilepsy, bereaved family members, and epilepsy advocates from around the world to foster knowledge, heighten awareness, and hasten action around epilepsy mortality broadly and SUDEP specifically.

The Making Sense of SUDEP Campaign kicked off the meeting with a video that captured the hopes of families affected by epilepsy. To follow was a unique meeting format that interspersed laboratory findings, clinical research, advocacy, and education.

Epidemiologists made incredible presentations that brought new understanding to some of the mortality numbers and framed the problem in a new and urgent light. For example, it was shared that up to 34% of people who suffer from generalized tonic clonic seizures that are never well controlled may die. An official from the CDC conceptualized the problem in terms of years of potential life lost and noted that the public health burden of epilepsy-related death is higher than that of more common diseases that affect the elderly such as Alzheimer’s disease or Parkinson’s disease. Another researcher noted that death rates from SUDEP are as high or higher than death rates from common causes of death in young people.

Researchers presented groundbreaking, and in some instances unpublished, scientific discoveries in areas including the role of genetics, how seizures may interact with the heart and breathing centers, and the role of certain neurotransmitters such as serotonin. Researchers and government officials discussed efforts to expand surveillance and create tissue banks for research purposes. Other speakers discussed current strategies for prevention of SUDEP such as seizure treatment, improving compliance and targeted education, as well as the future role of medical devices. Furthermore, doctors and nurses were equipped with information that will improve the way they communicate mortality risk and prevention strategies with patients. Finally, and just as importantly, bereaved families and persons with epilepsy shared their experiences and grounded the meeting in a sobering reality. The inclusion of families not only allowed for a more nuanced understanding of some of the challenges and opportunities around communication but provided a way for families to link with research and awareness opportunities. Having families as stakeholders in the meeting underscored the importance of partnership and working together to more quickly advance scientific understanding and ultimately prevent SUDEP.

For more information on the meeting please visit: www.aesnet.org/pame/ where slide presentations and audio recordings will be made available.

 

Coast to Coast

Think Before You Speak
Fifteen year old Devon Smith has never known a life unaffected by epilepsy. Her brother Zach suffers from seizures every day, which has led to an intellectual disability. She loves her brother more than anything, and is hurt when she hears people use the word “retarded” to mean “dumb.” When she was brainstorming a topic for her multi-genre writing class, she was struck. She would use the long-term project to speak out against the hurtful “r word.” Devon planned to raise awareness and educate her classmates. The result is a beautiful and thought-provoking collection of works. Thank you, Devon, for lending your voice to this important cause!
[See Devon's works here]

A True Ironman!
Having watched his five-year-old son David suffer seizure after seizure with no relief found in medications, Pablo Acevedo wanted to take action. On May 19th, Pablo ran, biked, and swam for a cure in the Memorial Hermann Texas Ironman in honor of David and all those with epilepsy. He donned his CURE shirt, spreading awareness as he raised dollars for research!

Running and Walking for a Cure
On Memorial Day, Colette Hough hosted Anna’s CURE Epilepsy 5K Run and Fun Walk at the Middletown Community Park in Maryland. The event honored 10th grader Anna, who suffers from epilepsy. Energetic walkers and runners sported matching t-shirts for the great event. The community rallied around the cause, resulting in partnerships from Middletown High School’s Girls Track and Field, Science National Honor Society, and Students Advocating Global Awareness (SAGA).

Art from the HeART
On June 2nd, the Peraza family & UCLA’s Mortar Board hosted Art from the heART. The event featured the opportunity for guests to meet professional artists from Disney, Warner Brothers, and more. Select Disney artworks were donated for the silent auction as well. The event was enjoyed by all that attended and definitely raised awareness for epilepsy!

Play Ball!
Southbury, CT came out in huge numbers on June 9th to support the Fradkin family’s battle to cure epilepsy at the first S4 Sarah & Southbury Strikeout Seizures.

David and Monica Fradkin’s goal was to have a day that centered around family. Ballantine Park served as home base for a variety of activities including tennis lessons, putting, bubble blowing, frisbee, face painting, basketball…and of course baseball, with incredible support from Major League Baseball. The highlight of the day was when their daughter Sarah sang the National Anthem followed by her brother Noah announcing it was time to PLAY BALL!
[Read more]

Stop the Eruption
On June 15th, John Olson and his dad Tom climbed Mount St. Helens to raise awareness for epilepsy. They named the climb “Stop the Eruption,” likening the effects of epilepsy on the brain to an active volcano. John was diagnosed with epilepsy at a young age, and has joined the fight to educate others about the seriousness of the disease. He and his father have now climbed 11 peaks, and show no signs of stopping. We know they will reach even greater heights!

Participate in a Clinical Trial
Interested in helping to advance research in epilepsy? If you are a person with epilepsy, or a loved one, please consider the possibility of enrolling in an ongoing clinical trial. You can see the types of studies that are sponsored by our government, as well as private institutions at www.clinicaltrials.gov. There are a number of trials and a variety of opportunities.

Sadly, a not-insignificant number of these trials fail because of their inability to recruit patients to participate. We’re not really sure why this has clinical trialsbeen such a challenge, but participation in these trials is a critical role for all of us who are personally impacted to at least consider. You can talk to your doctor, you can check out the clinical trials website and get more information there, and you can help spread the word with others you know who might be interested and eligible. These trials are critical to moving research into the realm of clinical practice, and we need to do our part, whenever possible, to ensure that these important studies can be completed successfully. Thanks!


Spreading the Word

Matt's Story
I had my first grand mal seizure when I was 12. My brother found me seizing after I fell off of the top bunk of our bunk bed and I was taken by ambulance to the hospital. I remember waking up in the ambulance confused and gasping for breath. After passing out again, I woke up in the hospital room and was lucid enough to feel embarrassed about the nurse stripping my soiled clothes and placing a gown on me. A certain amount of naivety cushioned the experience, but I remember feeling bothered as I caught curious stares at my body hooked up to a portable EEG machine. I tried to hide in my hospital room as much as possible to deny my status as a neurological hospital patient. Most of all, I remember my parents’ concern and how my little brother was afraid of me.
[Read more]

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

Upcoming Event Warrior’s Realm Traditional Martial Arts & Media Festival
Friday, Aug 3 – Sunday, Aug 5, 2012
Cincinnati, OH
Info: Event Details

Upcoming Event "The Dog Days" 2nd Annual Dog Wash and Cook-out Fundraiser to Benefit CURE
Saturday, August 11, 2012
10am – 2pm
Madison, WI
Info: Event Details

Upcoming Event 8th Annual Drive for CURE
Thursday, August 23, 2012
Beach Park, IL
Info: Event Details

Upcoming Event Second Annual Teresa's Birthday Benefit for CURE
Thursday, September 13, 2012
San Francisco, CA
Info: Event Details + Donation

Upcoming Event 2012 Boston Benefit
Thursday, September 20, 2012
Fenway Park, Boston, MA
Info: Event Details

Upcoming Event Rock the Block for Pediatric Epilepsy Research
Saturday, September 29, 2012
Chicago, IL
Info: Event Details

Click here for more information on upcoming events

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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