From Houston to Oklahoma City

November 22, 2013 1 comment

Keeping up the momentum after last week’s great event in New York, I traveled to Houston and to Oklahoma City for more fantastic exposure for CURE and epilepsy research. I was thrilled to be there to hear Peter Crino, MD, PhD, present his exciting discoveries at the second lecture in our CURE the Epilepsies: Frontiers in Research seminar series.

Great CURE friends Ellen Benninghoven and Michael Schafer welcomed us to Houston with a dinner at their home

Great CURE friends Ellen Benninghoven and Michael Schafer welcomed us to Houston with a dinner at their home

CURE Grantees await the start of Peter Crino's lecture at BCM

CURE Grantees Anne Anderson, MD, Edward Cooper, MD, PhD, Peter Crino, MD, PhD, and Jeff Noebels, MD, PhD, await the start of Peter Crino’s lecture at Baylor College of Medicine.

Thoroughly enjoyed my personal tour of the Gordon and Mary Cain Pediatric Neurology Research Foundation Laboratories at Texas Children's Hospital with Scientific Director and CURE Grantee John Swann, PhD

Thoroughly enjoyed my personal tour of the Gordon and Mary Cain Pediatric Neurology Research Foundation Laboratories at Texas Children’s Hospital with Scientific Director and CURE Grantee John Swann, PhD

CURE board member Renzi Stone and I toured the epilepsy units at the childrens hospital at OU Medical Center

CURE board member Renzi Stone and I toured the epilepsy units at the childrens hospital at OU Medical Center

Taking a Bite out of Epilepsy in the Big Apple

November 15, 2013 2 comments

Last night, we were reunited with our friends in New York for our Annual Reception to benefit epilepsy research. It was a great turnout, with many of our scientists in attendance. Thank you to Willie Geist, a terrific host, and all of our supporters and sponsors who made another evening in the Big Apple a success. See some pictures from the reception below!

This morning, our friends at Morning Joe welcomed Tracy Dixon-Salazar, PhD and I on the show, where Tracy shared the story of how deeply epilepsy has impacted her life – driving her to get a PhD in neurobiology with hopes of better understanding the seizures that plague her daughter Savannah. I was proud to address the progress CURE is making in research, and the endless possibilities for cures awaiting us with the right infusion of resources and attention.

And here’s some hopeful news for patients struggling with uncontrollable seizures–always such welcome new when new devices and treatments become available.

Magic for CURE at the Embassy of Kuwait

November 8, 2013 Leave a comment

Sunday night, Rima Al-Sabah and her husband Kuwaiti Ambassador Salem Al-Sabah hosted a truly magical evening to benefit CURE and epilepsy research. We are blessed by their generosity and, though Rima kept telling me they were “honored to contribute in a small way,” it was anything but small.

The dinner, held at the stunning Kuwaiti Embassy Residence, included guests such as Supreme Court Justice Stephen Breyer, Secretary of Agriculture Tom Vilsack, Reps. John Dingell and Joe Kennedy, MPAA head Chris Dodd, NBC’s David Gregory, White House Chief of Staff Denis McDonough, several other ambassadors and many more friends and supporters. Bob and Lee Woodruff emceed the event, which was fitting due to their personal connections to epilepsy as well as their work with veterans—so many of whom, as a consequence of TBI, have developed epilepsy.

We owe a huge debt of gratitude to Rima and Salem, whose generous spirits were on full display.

Ambassador Salem Al-Sabah and his lovely wife Rima with dear friends of CURE and emcees of the evening Lee and Bob Woodruff.

Ambassador Salem Al-Sabah and his lovely wife Rima with dear friends of CURE and emcees of the evening Lee and Bob Woodruff.

On the science front, we’re hoping to hear great things about epilepsy coming out of the upcoming Society for Neuroscience meetings in San Diego (November 9-13), and—if you’re a researcher—please note our upcoming January 15th deadline for Letters of Intent for our Pediatric, Prevention of Acquired Epilepsy, Challenge and SUDEP Awards, and help spread the word!

And, if you’re in New York next week, join us on the 14th for Canapes and Conversations. Tickets and sponsorships are still available! Stay tuned for pictures.

Our Government Back At Work

November 2, 2013 1 comment

At CURE, we are relieved and grateful that federal employees have returned to their jobs and can continue their work to improve the health of this nation and beyond.

To our community, during these first days of November–Epilepsy Awareness Month–here are two efforts that are particularly noteworthy:

Yesterday, the Centers for Disease Control (CDC) released their Morbidity and Mortality Weekly Report (MMWR). The issue featured research on Comorbidity in Adults with Epilepsy, in which CDC analyzed data from a national health survey of adults (18 and older) with epilepsy.  The results indicated a higher prevalence of non-psychiatric comorbidity (such as cardiovascular and respiratory disorders) in adults with epilepsy, than in those without. The CDC urges public health agencies and healthcare providers to work together to better understand the frequency in which adults with epilepsy report other medical conditions, so that we can better understand the risk—or even prevent entirely—these other complications for patients with epilepsy. The full report can be found here.

Also, the National Institute for Neurological Disorders and Stroke (NINDS) is requesting public comment on the draft 2014 NINDS Benchmarks for Epilepsy Research. These Benchmarks reflect shared priorities across the epilepsy community for research toward clinically meaningful advances in understanding and treating the epilepsies.  This is an amazing opportunity to share your perspectives and thoughts—this is your last chance, deadline is this Monday, November 4th!

Seasonal Inspirations

October 31, 2013 2 comments

For those of us who live where the leaves and the skies are changing dramatically, this is a time of year to hunker down, prepare for the inevitable frigid temperatures to come, the shortening hours of daylight, and all that that means for our day to day lives.

It can be a time when it’s hard not to feel down at times, which is why I’m so impressed with and thankful for the attitudes and energy of so many CURE friends and supporters who are doing all they can to bolster spirits, raise awareness and raise dollars for research.

I hope you’ll all join me in congratulating Alison Kukla who just ran her first marathon to benefit CURE. What an amazing accomplishment, Alison, and thanks from all of us who benefit from your efforts!

Alison Kukla representing CURE after completing her first marathon in Washington, DC

Also, coming up in November, George Koether is racing 4,700 miles from Cape Town, South Africa to Western Australia. Approximately 23 days of Deep Ocean sailing, “The Southern Ocean Sleigh Ride,” as it is called, is what some consider the most extreme sailing in the world!  Check out his website, and cheer him on with a donation!!!

De Lage Landen at the start of the race from the Gold Coast to Singapore in the Clipper 11-12 Round the World Yacht Race.

Throughout the month of November, Lyndsay Kappel, her husband Steve and their daughter Emme (of North Canton, Ohio) are hosting a fundraising page, Emme’s Epilepsy Fundraiser. Their goal is to raise $1,000. Help them reach their goal and donate now!

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Emme Kappel

From way up north in Ludington, Michigan, where I’m sure the cold weather will hit first, Marnie Nickelson will be hosting Cornhole for CURE, a cornhole tournament on November 9 in support of her son Jett who has epilepsy. Her family and community are truly standing by her and participating!

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Jett loves to play in cornhole tournaments

On November 24, Dr. Tyler Katz is running her first half-marathon to support CURE. Epilepsy is a cause close to Dr. Katz’s heart, as her son, Sammy, suffers from Infantile Spasms and her niece was diagnosed with epilepsy three years ago. Sponsor her race and help bring us closer to a cure by donating here.

Finally, Krystyna Wituszynski will be running a 5k (Gobble Job 5K) in Dallas, Georgia, to support CURE on Thanksgiving Day. We know she’ll have earned her thanksgiving feast that day!

You can help support these great folks and their amazing efforts by simply following the links above. Every contribution not only cheers them on, but contributes to the dollars CURE has to invest in our cutting-edge research program.

And, last but not least, Happy Halloween from Lauren! I was pretty proud of my personal Rock Star!

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Happy Halloween to all, and for all that you do to boost our spirits and raise our hopes that a cure is within reach!

And it’s not too late…tickets still available if you’re in the NYC area, for Conversations and Canapes on November 14!

Frontiers in Research launched!

October 25, 2013 Leave a comment

We were so excited to launch our new initiative, CURE the Epilepsies: Frontiers in Research this week in Denver! Ivan Soltesz, PhD  (longtime friend and former SAB member) presented the inaugural lecture Cell-type Specific Control of Neuronal Circuits in Epilepsy, we got to visit with CURE grantees Manisha Patel, PhD and Amy Brooks-Kayal, MD and we also enjoyed dinner with CURE friends and supporters the evening before.

Research seminars and Grand Rounds are a weekly occurrence at Universities around the country and the world, but we have known for some time that epilepsy research is significantly under-represented in those seminars.  This is a fantastic opportunity to raise awareness of the innovative research that is happening in the field, by sponsoring a lectureship during this programs.  We plan to sponsor about ten, at different institutions in the US and Canada, in this first year, and are grateful to our friends who have already agreed to host these lectures. Check out the upcoming schedule here and some photos from Denver below!

With our amazing dinner co-hosts Kathy and Art Judd.

Thanks to Kathy and Art Judd, long-time friends of CURE, who co-hosted our get-together in Denver the evening before the Seminar kickoff.

Dr. Ivan Soltesz (seminar speaker) and Manisha Patel (host) discuss their exciting research projects.

Drs. Ivan Soltesz (our seminar speaker) and Manisha Patel (who hosted him) discuss Ivan’s presentation

At the dinner with researchers and friends of CURE.  From left: Manisha Patel, PhD, Ivan Soltesz, PhD, Governor John Hickenlooper,  Coral and Mark Stevenson.

We were thrilled that Colorado Governor Hickenlooper joined us for dinner the night before. Here we are with Dr. Patel, Dr. Soltesz, Coral and Mark Stevenson

At the dinner. From left: Diane Rosenthal, Ethan Axelrod, Jamie Patton, Jane Saltzman

At the dinner. From left: Diane Rosenthal, Jamie Patton, Ethan Axelrod, Jane Saltzman

Dr. Soltesz discusses the relevance of his work to epilepsy.

Dr. Soltesz discusses the relevance of his work to epilepsy.

Speaker spends time with pos-docs and junior researchers.

Dr. Soltesz joined post-docs and junior researchers for more relaxed conversation after a full day of science at the University of Colorado.

PS – Introducing Mira Elyse Milder……the newest addition to the CURE family who was born yesterday to our Associate Research Director, Julie Milder and her husband Jake!

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Mira Elyse

Congratulations!

October 21, 2013 2 comments

It gives me extraordinary pleasure to announce the second cycle of our 2013 research grant cycle. Despite the difficult times we are in, so many of you have done all you can do to enable us to make the greatest investment in epilepsy research to date.

Altogether, including our first round of funding this year and our Infantile Spasms Research Initiative, we have now awarded $2.6 million in research grants this year.

We are indebted to each of you who has joined and contributed to this effort, and are thrilled to announce our latest round of projects to you now.  These investigators have gone through a rigorous review process—including peer review by scientists as well as input from stakeholders—and we have every confidence that their work will add meaningfully to our body of knowledge and are representative of the cutting-edge research that CURE has built its reputation on.

Please join me in congratulating and celebrating — these are the moments all of us have worked so hard for!

Challenge Awards
Multi-year grants up to $250,000 for investigators exploring cutting-edge approaches to curing the epilepsies.
John Huguenard, PhD and Jeanne Paz, PhD (Stanford University)
Janice Naegele, PhD (Wesleyan University)

Prevention of Acquired Epilepsies Awards
Multi-year grants up to $250,000 in support of research into the prevention and treatment of epilepsies that occur after insult to the brain such as traumatic brain injury, stroke, and tumor viral infections.
Detlev Boison, PhD (Legacy Emanuel Hospital and Health Center-Portland, OR)
Amy Brooks-Kayal, MD (University of Colorado Denver) and Shelley Russek, PhD (Boston University School of Medicine)
Raimondo D’Ambrosio, PhD (University of Washington)

Sudden Unexpected Death in Epilepsy (SUDEP) Awards
One-year grants up to $100,000 in support of innovative research that will enhance our understanding and ability to prevent SUDEP.
Gordon Buchanan, MD, PhD (Yale University)
David Paterson, PhD (Boston Children’s Hospital)
Else Tolner, PhD and Arn van den Maagdenberg, PhD (Leiden University Medical Center [LUMC] the Netherlands)

Pediatric Epilepsies Awards
Multi-year grants up to $250,000 in support of research projects addressing the many syndromes that affect children.
Edward Cooper, MD, PhD (Baylor College of Medicine)
Timothy Simeone, PhD (Creighton University)

Stay tuned for reports from Denver, where, this week, we will be launching our “Curing the Epilepsies: Frontiers in Research,” a new Seminar Series.

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