Farewell and many thanks to.....

Huda Almanaseer will be returning to Northwestern University in the fall to start her senior year, after a summer at CURE, rolling up her sleeves and helped our staff with any and many tasks and projects!

Fahiemah, who has interned for CURE before, is working on her masters in journalism at Northwestern and also helped this summer wherever we needed her—particularly around coordinating our move! We wish her well completing her degree, and thank her for continuing her interest in CURE!

Kara helped Danielle as a Research Program Intern this summer, and actually was in Chicago (from Boston) solely for this internship! She’s returning to Boston to complete her MPH at Boston University. We are sorry to lose her in the office, but thankfully she’ll be taking CURE on as her long-term project working with us on several research-related projects.

Thanks, Huda, Fahiemah and Kara for helping us get through this summer. You will be missed!!!!

with Patty and Captain Pat Horan in the new CURE office

Pat, Patty, and me with the CURE team

I’m off to Bethesda for an exciting and unprecedented NIH workshop, “Antiepileptogenesis and Disease Modification.” I’m expecting great new directions for scientific efforts to emerge!

I’m not quite sure how to describe the feelings we’re all having around this move because what it truly means is that our work–and your support–have taken us to a new place. It’s amazing when you think about it: One hundred research grants and over $10 million, lots and lots of progress in our research and in our awareness programs, and so many new people rallying behind this cause. Somehow that is all reflected in the boxes we’ve been packing, and in the promise of the new space we’ll start inhabiting, where we’ll grow this effort even more.

In those boxes is a lot of really important history. What I’m sure we’re going to find in our new office is a whole lot of room to continue our growth and momentum.  What I know we all have in our hearts is an unlimited amount of new hope!

Check out some pictures of our old and new homes!

You accumulate a lot of memories--and boxes!--in eight years.

Megan, Bridget, and Kara hanging out in the close quarters for one of the last times!

Michelle in her old office

You can call up to our new office! (We won't be answering until later in the week though...) Our new address is: 223 W Erie St, Suite 2SW, Chicago, IL 60654

Assembling the new furniture in the new office space!

The new CURE office has a "CURE Red" wall!

Gordon Conference in Epilepsy 2010 Vice Chair Carolyn Houser, 2010 Chair John Huguenard, and 2006 Chair Kevin Staley

I was at the first two Gordon conferences; they’re set-up like no other science meeting I’ve ever been to!  You eat in the cafeteria, sleep in the dorms, and convene for sessions every morning and evening. In between and afterwards there are scheduled hikes, kayaking trips, lobster bakes, dances… oh yes, and poster sessions too. I know it sounds slightly crazy, but the networking and camaraderie that comes from living together like this for a week, seeing the folks you’re used to seeing at meetings in suits sporting sandals and shorts, the blending of established and young investigators together in this type of setting—it’s all really good stuff!

Plus, because we never miss an opportunity to try to inspire, we take advantage of having so many brilliant minds together in one room to show our most recent CURE video. Many of the basic scientists there, who are working in areas that will directly add to our understanding of epilepsy, don’t really know about the human cost.

CURE friend Tracy Dixon-Salazar, PhD (right) can't believe she's keeping such renowned company! Here she is with Elsa Rossignol, MD of NYU and David Prince, MD of Stanford (2008 and 2009 CURE grantee)

Lots of our grantees, SAB members, and reviewers are there, so we know it’s going to be a great meeting. Vicky Whittemore, our Scientific Consultant, is there as well. She  knows we’ll want a full accounting of all activities–scientific and not–at the end of the week!

CURE Scientific Consultant Vicky Whittemore, PhD at the Gordon Conference!

So, now we’re in the first stage of the process we’ll go through over the next few months to select the projects we are going to support, beginning January 1, 2011, in our Innovator category and in our brand new Taking Flight category for young investigators.

The Innovator Awards support researchers with new, out-of-the-box ideas about how to conquer this disease. This award is designed to stimulate brand new ideas and approaches, which could lead us toward a cure. And, the Taking Flight Awards are what you all helped to fund during our Mother’s and Father’s Day campaign this spring. Thanks to so many of you, we will be able to give out three awards to bright, promising young scientists–launching them on their own, independent careers and ensuring that we keep the next generation of researchers invested in this area of work.

Program Officer Danielle Davis with Research Program Intern Kara Dentro

CURE Program Officer, Danielle Davis, with the help of Kara Dentro (one of our amazing interns this summer at CURE) have begun to process these now. We received 30 Letters of Intent for our Innovator Awards, and 26 for our Taking Flight Awards. Thanks to all of you for helping to support what we know will be a great and promising new round of research grants!

Lauren with Chicago Sky star Sylvia Fowles!

Friday night, WNBA Chicago Sky Center Sylvia Fowles lent her towering voice and passion to help raise awareness and funds for epilepsy research! A portion of the proceeds from Friday night ticket sales were donated to CURE,  CURE t-shirts were tossed out to the crowd during the game, and some of us were lucky enough to go back and meet members of the team before the game, and greet Sylvia again after the game. Sylvia is an absolute star–she led Louisiana State University to four straight NCAA Final Four appearances, has gone to the WNBA All Star game two years in a row, and was a part of the gold medal-winning 2008 US Olympic Women’s Basketball team!

Lauren and Sylvia practice their dance moves

Sylvia reached out to CURE because her nephew Morris, who is now 9 years old, has had epilepsy since birth. We’re so grateful for her help in raising awareness and money for research. Everyone at the Sky were great–it’s clear we have some new friends and supporters of this cause!

Sylvia in her CURE t-shirt

Thanks to Sylvia and Chicago Sky for reaching out and helping!  We look forward to working together.

CURE Board member Gardiner Lapham, who shares her story in today's NY Times article on SUDEP

In the article, our Board member Gardiner Lapham and our good friend Steve Wulchin bared their souls about the loss of their children to this most horrible consequence of epilepsy.  They did this to try to help save other families the heartache they have had to endure. Also, Scientific Advisory Board member Jeff Noebels, MD, PhD and our CURE 2009 Grantee Elizabeth Donner, MD, offered scientific perspectives on this problem.  I’m so proud of what these families are doing to change the dialogue and shed light on this issue, and so grateful to the scientists who are starting to focus their efforts in this direction.

2009 CURE Grantee Elizabeth Donner, MD offers her scientific perspective on SUDEP in today's NY Times

I remember when Jeanne Donalty joined our Board seven years ago, after the death of her son Christopher. At that time, she told me she felt “toxic” talking about SUDEP to doctors and scientists–they literally seemed to avoid speaking with her about the subject, saying things like: “Why would we talk to patients about this when we can’t even tell them who’s at risk or how to prevent it from happening?”

Board member Jeanne Donalty's son Chris, who died of SUDEP

Today it is clear Jeanne’s efforts, and those of so many families who have lost loved ones since then, have begun the conversation and in so doing, elevated awareness of this enormous problem, as evidenced in today’s NYT piece.  We are definitely moving  in the right direction. And, CURE’s targeted research program is beginning to shed some light on underlying causes and risk factors. Is it enough to prevent these tragedies from happening? Not yet, and we continue to hear about them far too often. But I know the power of these grieving families along with the research efforts you help us to support will lead us to a much brighter future.

Read the New York Times article, “Unmasking Silent Killer in Epilepsy.”

But, when it’s all said and done, the over-riding emotion, as emotionally and physically draining the day is, is hope. Patients and families coming together around this cause gives us all such hope. The energy we feel being with others who are just not willing to accept the status quo any longer. The support we feel in knowing we are not alone and that together we can change the world!

Thanks to John Del Cecato, Sarah Hegeman, and Andrew Dryer for–once again–giving so generously of their time, talent, and passion to help us raise the awareness so critical to our mission!

And check out some pictures below of our great (but exhausting!) day!

John Del Cecato (the video director) and Mike Singletary (one of our video stars)

One of our video stars Scott Mannis with dear CURE friends Lisa Siegel and Lauren Beck

Jared Prioleau, another of our great video stars, practicing his dunk

Liane and Marc Carter are prepped for their interview

Sarah Hegeman and John Del Cecato, who graciously lend their services each year

Charlie and Noah Fischer

Check out our videos from past years!

I was thrilled to be included–in part, because I finally got to meet Fia Richmond, the founder of CNS, with whom I’ve had a great email and phone relationship (unfortunately she lives in Santa Barbara, so it may be some time before we get to meet in person again).  Over the years, we’ve shared heartaches, frustrations–and even some successes!

with Fia Richmond

This conference was definitely something she can be proud of.  She brought this group together to explore and lay the groundwork for the establishment of Pediatric Neurological Disorders Centers of Excellence. Lots to think about, and lots of follow-up, but great ideas flowed and next steps were established. I think the advocacy groups in this arena (like CURE) can play a key role in creating registries of patients so that when clinical studies of new therapies are ready, we can help steer the appropriate patients to the appropriate studies.  Patient recruitment is so often why this type of study fails, so it’s exciting to think about ways we can all contribute to their success.