CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eUpdate : September 2012
CURE

Dear Friends,

Letter from CUREAs CURE's research advisor, I am often struck by how CURE's advocacy and support has informed current research and shaped how we think about the challenges the research community faces as it moves toward a cure for the patient with epilepsy. CURE's investment has led to a paradigm shift in how many of us think about treatment and prevention of epilepsy.

Research funded through the many CURE research programs has led to a greater understanding of genetic and acquired epilepsy. Newly identified molecular targets have emerged and serve as the basis for the development of novel therapies for the treatment of therapy-resistant epilepsy. This is indeed an exciting time that is providing continued hope for the patient and their caregiver as these new therapies move closer to clinic and ultimately the marketplace.

Soon, CURE will be inviting full proposals for the 2013 Taking Flight and Innovator Awards. The Innovator Award is particularly important as it aims to fund the highly innovative and somewhat risky research that is perhaps not ready for more traditional funding mechanisms such as the NIH. CURE's early investment in innovative science is important as it allows scientists to obtain essential preliminary data and explore entirely new avenues of research.

The Taking Flight Award is also extremely important to CURE's mission. It invests in young scientists who are just completing their training and looking to establish themselves as independent investigators. Many of the preeminent epilepsy investigators today received CURE grants that helped launch their research programs.

Over the next few months, CURE will begin to fund a collaborative team of investigators that will work together to accelerate a greater understanding of infantile spasms. One outcome of this endeavor will hopefully include the advancement of a new, disease-modifying therapy into the clinic. While all of the research programs of CURE are important, the IS Initiative is unique in that it involves focused ‘team science' that will be driven by the outcomes of the research in a responsive and timely manner.

It's because of supporters like you that we are able to make all of our investments. Your incredible generosity makes it possible for all of us to think about the day when a cure for epilepsy will be realized.

H. Steve White, PhD.
Senior Research Advisor

CURE

Your Dollars at Work

Top Notch Science and Camaraderie at the Gordon Conference
Every two years, scientists gather for a full week of science, networking, and fun for the Gordon Research Conference on Epilepsy. This year's title was Mechanisms of Epilepsy and Neuronal Synchronization, and it was held August 19-24 at Waterville Valley Resort in the White Mountains of New Hampshire. What truly makes the Gordon Conference different from other conferences held each year is its intimate and casual atmosphere. This year, there were approximately 200 attendees, and nearly half of them were graduate students and postdoctoral fellows. This composition of attendees fosters natural mentorship of young investigators, as they get to eat, talk, and even hike with the leaders in the field. The days are long (14 hours from breakfast until the end of the last presentation), but there is an afternoon break each day of which people take great advantage. Some used this time for meeting face-to-face with collaborators. Many used this time to enjoy all of the activities offered at the resort: hiking, free mountain bike rentals, golf, tennis, and so much more.

In addition to the obvious camaraderie amongst epilepsy researchers, this year's meeting was filled with spectacular science. Many current and former CURE grantees were among those selected to present their work to this audience. CURE is incredibly proud to be a financial supporter of the Gordon Research Conference, and in addition, to have provided travel support for 10 of the field's rising stars so that they could participate in this unique experience. For those out there seeking hope, it is here in the form of 200 scientists living and breathing epilepsy research together for a full week, returning to their labs reenergized and motivated to find a cure.

What’s Happening at CURE

Vote for CURE!

Vote for CURE!
CURE is honored to be nominated by one of our supporters for inclusion in JP Morgan Chase's 2012 Community Giving Campaign. This program is specially designed to spread awareness of thousands of nonprofit organizations while also giving them the chance to compete for their share of a $5 million grant sponsored by Chase.

Until September 19, Chase customers and CURE supporters can vote for us at www.ChaseGiving.com or on Chase's Community Giving Facebook page. Please vote to show your support for CURE! And spread the word!

Maine Calling

Chair Susan Axelrod on "Maine Calling"
On August 29th, Susan Axelrod, along with CURE friend Christy Shake and Dr. Peter Morrison (pediatric neurologist with Maine Medical Center) participated in an informative segment on Maine Public Broadcasting's show, "Maine Calling." Focusing on the topic "Children and Epilepsy," the panelists discussed what services and treatments are currently available, as well as where we are in research into causes of and cures for epilepsy.
[Listen]

CURE is Hiring!
Check out our latest job opening, and apply to become a part of the CURE team. CURE currently has a staff opening for the positions of Director of Development. Click here to learn more about this great opportunity and to apply.

Welcome, Lindsey and Robin!
CURE is pleased to welcome two new employees, Lindsey Naughton and Robin Osborne.

Lindsey joins the team as Administrative Assistant. Prior to CURE, she was involved in various volunteer and pro-bono activities with other Chicago-based nonprofits. Having spent the majority of her career in a corporate setting, Lindsey is excited and committed to providing support, outreach, and awareness to the epilepsy community.

With a background in nonprofit accounting that spans over a decade, Robin has joined the team as Staff Accountant. She is pleased to bring her talents to CURE with a passion and purpose for this cause that is near and dear to her heart, having witnessed her grandfather and other family members struggle with this disease.
[Read more about Lindsey and Robin]

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

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

Upcoming Event Joey's Song Release Party and Benefit Concert Fighting Epilepsy With Music
Sunday, September 23, 2012
Madison, WI
A portion of the proceeds from the sale of CDs will benefit CURE.
Info: Event Details

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

Upcoming Event Natalie Jane's 18th Birthday, BBQ, Dance Fundraiser for CURE
Saturday, October 6, 2012
Wakarusa, KS
Info: Event Details

Upcoming Event Rica Runs for a CURE
Sunday, October 7, 2012
Victoria, British Columbia Canada
Info: Event Details

Upcoming Event Cornhole to Cure Epilepsy
Saturday, November 10, 2012
Ludington, MI
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.

 

Coast to Coast

Reaching Great Heights!
In August, John Olson, with his climbing mentor and friend Eric Alexander, climbed to the summit of Mt. Yale in Buena Vista, CO, the 21st tallest peak in the state. This magnificent feat comes on the tail of another great climb for epilepsy awareness just two months ago, when John and Eric reached the top of Mt St. Helens. John has suffered from epilepsy since he was four years old. He leads a very active life and encourages all people with disabilities to get involved with public activities as much as they can. For more information on their climbs, visit www.highersummits.com.

Epilepsy Warriors
On the weekend of August 3rd – 5th, Master C.M. Brown and the Cincinnati-Northern Kentucky Hwa Rang Epilepsy WarriorsDo School hosted the first annual Warriors' Realm Traditional Martial Arts & Media Festival to benefit CURE. The event featured workshops taught by respected Grandmasters nationwide in Karate, Tae Kwon Do, Wushu, Balintawak, Tai Chi, Kobudo, Bando, Wrestling, and Kung Fu. Attendees learned about various aspects of martial arts such as sparring, kicking drills, exercises, and first aid. C.M. hosted the unique event in honor of his nephew Jared, who has epilepsy.

Dog Days

Dog Days
Big dogs, small dogs, fluffy dogs, and even pooches with spectacles and polka dots were treated to baths and bubbles to raise funds for epilepsy research. Julie and Brent Bollenbach hosted the 2nd Annual Waggin' Tails Dog Wash for Epilepsy in Madison, WI on August 11th. With the help of more than 20 volunteers, over 125 dogs were transformed into sparkling canines. The great afternoon also featured a cookout, silent auction, and raffle. If you're in the area, make sure to bring your pooch next year!

Susan and Jim Schneider

A Hole in One!
Susan and Jim Schneider were back on course for their 8th Annual Drive for CURE, held August 23rd at the Thunderhawk Golf Club in Beach Park, IL. Completely sold out, over 100 golfers teed off to benefit CURE. One very lucky golfer even won $10,000 for his remarkable hole-in-one on the 13th hole.

This annual event supports the "Julie's Hope" awards, named after the Schneiders' daughter Julie, who has epilepsy. Thanks to past support, two such awards have already been sponsored. "Flexible, Active, Implantable Devices for Epilepsy" in 2011 (a three-year award that is still underway) and "Generation and Characterization of Mouse Models of Cortical Dysplasia" in 2007 (also a three-year award). We can't wait to see the future cutting-edge studies possible thanks to this year's incredible event!

In the News

The Third International Symposium on Dietary Therapies for Epilepsy comes to Chicago in September
Sponsored by the Charlie Foundation, the Third International Symposium on Dietary Therapies for Epilepsy and Other Neurological Disorders will be held in Chicago September 19-22. The first three days will focus on the clinicians and researchers, as they discuss the latest in ketogenic therapies for brain disorders. Saturday, September 22 will be a family day in which patients and their families are invited to hear from physicians and researchers who prescribe and study ketogenic therapies. Additionally, there will be testimonials from parents whose children have found success with these dietary therapies. The day will close with cooking demonstrations and exhibits. If you would like more information, please visit www.charliefoundation.org.

Help Advance Research
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.

One opportunity is the Epilepsy Phenome/Genome Project (EPGP). EPGP is an observational study sponsored by the National Institutes of Health. They are enrolling two types of participants: 1). A person who has been diagnosed with epilepsy who also has a brother or sister with epilepsy of unknown cause, or 2). A person who has been diagnosed with epilepsy due to Infantile Spasms, Lennox-Gastaut Syndrome, Polymicrogyria, Periventricular Heterotopia. Participation involves a blood draw, interviews, and review of medical records: Info: www.epgp.org

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 been 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!

IICEPR - Register today!
International Ion Channel Epilepsy Patient Registry
www.iicepr.org

The IICEPR was established in 2011 in a collaborative effort between the University of Michigan and Miami Children's Hospital, with funding from Dravet Syndrome Foundation and ICE Epilepsy Alliance. We encourage all families to register their children with Dravet syndrome or an associated ion channel epilepsy with the IICEPR.

According to Dr. Ian Miller of Miami Children's Hospital Brain Institute, "The registry is a critical tool the research community can use to rapidly identify patients who might be interested in studies. The studies could include treatments such as SUDEP prevention, novel medication development, or DNA-based therapies. It can also help us better define the natural history of the disorder, or even put basic scientists in touch with individuals who have specific mutation characteristics."

To enroll a patient in the IICEPR, click here. For questions on the registery, contact Elizabeth Sullivan, Study Coordinator.

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