Good Times…Good Science

August 21, 2014 Leave a comment

While our Science Team, many of our grantees and others who support CURE and our mission are nestled up in Mt. Snow, Vermont this week, others around the country are equally hard at work raising the funds we so desperately need and are so very grateful for.  In fact, some of your hard-earned dollars are supporting the Gordon Research Conference that’s happening right now, an every-other year conference I have heard many say is the “best scientific conference” by far. Opportunities to network, learn newest findings, and form new alliances abound.

Neuroscientists hike Mr. Snow in search of the cure!

Neuroscientists hike Mt. Snow in search of the cure!

CURE grantee Manisha Patel, PhD, Karen Wilcox, PhD and CURE Associate Research Director Julie Milder, PhD reach the summit.

Serious brainpower at the summit: CURE grantee Manisha Patel, PhD, Karen Wilcox, PhD and CURE Associate Research Director Julie Milder, PhD.

Grantees Steve Danzer, PhD sporting CURE gear and Avtar Roopra, PhD in our signature red!

Grantees Steve Danzer, PhD sporting CURE gear and Avtar Roopra, PhD in our signature red!

CURE's Gordon Research Conference Young Investigator Travel Award Winners were ecstatic to be in the throes of such tremendous science all week.

CURE’s Gordon Research Conference Young Investigator Travel Award Winners were ecstatic to be in the throes of such tremendous science all week.

Last week, outside Chicago, our good friends Susan and Jim Schneider hosted their 10th Annual Drive for CURE. Their family, friends, colleagues and the amazing community they have built, were out in full force. It was perhaps one of the most beautiful days of the summer, and the Schneiders deserved to have had the sun—and all of us—smiling upon them!

Gloria Stender, Julie and Susan Schneider take a ride around the course to see their many guests!

Gloria Stender, Julie and Susan Schneider take a ride around the course to see their many guests!

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Heartfelt ‘thank you’ speeches opened the dinner program, with a special tribute to Susan’s brother Steven, who has played a major role in the event over the last decade.

 

And, busy at work in Madison, Wisconsin, the hosts of Joey’s Song 2014 are furiously putting finishing touches on what promises to be another extraordinary event to benefit CURE. If you’re in the area, join our Madison Friends of CURE on September 7 at 6pm for an evening of music, fundraising and fun. Tickets are almost sold out so get yours soon!

A billboard in busy Madison, WI, advertises the 2014 Joey's Song event benefiting CURE and epilepsy research!

A billboard in busy Madison, WI, advertises the 2014 Joey’s Song event benefiting CURE and epilepsy research!

It can’t be said often enough how grateful we are to our growing number of volunteers who contribute so very much to help sustain and grow our research program.  Thank you all for your loyalty and belief that together we are making a difference in the lives of all who are affected by epilepsy.

Epilepsy Research at the Department of Defense—great news to share!

July 17, 2014 Leave a comment

We are so proud today to acknowledge the incredible work of Senator Dick Durbin (D-IL) on behalf of the Department of Defense, who announced today the creation of a $7.5M line item for epilepsy research in the Defense Appropriations bill. This means epilepsy researchers will no longer have to compete with those in other medical fields for funds from the Department of Defense to conduct their critical work.

Over the years, CURE has been a leader in the quest for the answers that research will provide into head injury and the epilepsy that results as a consequence (called post-traumatic epilepsy, or PTE). The goal is to recognize who is at risk and develop interventions that can one day prevent those individuals from developing this life-long, potentially devastating condition.  

We are honored to have worked with Senator Durbin’s office in Washington, and humbled to have met with individuals at the Pentagon regarding this critically important unmet need.

And so today’s announcement of the Defense Appropriations bill line-item dedicating $7.5 million to accelerate this area of research is so very, very exciting for us at CURE.  But mostly we are thrilled for all those whose lives have been and will continue to be impacted.  Our veterans with head injury, civilians with head injury—-and all their loved ones of course—have increased cause for hope today.

Thank you, Senator, Durbin. Now let the research begin!!!

Long-time supporter of cure and epilepsy research, Senator Durbin addressed the crowd at our 10th Annual Chicago Benefit in 2008

Long-time supporter of cure and epilepsy research, Senator Durbin addressed the crowd at our 10th Annual Chicago Benefit in 2008

 

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Senator Durbin joined us this past May as well–clearly enjoyed James Taylor’s performance as much as the rest of us!

 

Reaching for the Mountaintops

July 16, 2014 Leave a comment

Thanks to Jong Rho, MD, the inspirational scenery of Banff, Alberta, Canada was the backdrop for the gathering of CURE’s team of scientists and advisors to share progress and come together around next steps on one of our most promising research initiatives. This has been an amazing journey for all of us—shifting our comfort zone away from individual research projects in individual labs, to really and truly working together to make a difference for children with Infantile Spasms.

Our advisors and our team of investigators were all inspired not just by the magnificent Canadian Rockies, but by the speed with which progress has been made, and the promise that future efforts offer. It’s not easy for any of us to change the way things are usually done, but everyone involved has really kept their eyes on the prize—the kids we aim to help—and the results are so exciting to all of us.  In just eighteen months, tremendous progress has been made, and we are grateful to — and inspired by –everyone involved!

We all found time now and then to breathe the mountain air and get further inspiration from the scenery.

We all found time now and then to breathe the mountain air and get further inspiration from the scenery.

Young investigators from our team members labs joined us in full force---poster presentations from this new generation of scientists were inspiring!

Young investigators from our team members labs joined us in full force—poster presentations from this new generation of scientists were inspiring!

Robert Pacifici, PhD and Chief Scientific Officer of CHDI joined us for a keynote address the first night, and inspired all of us with valuable lessons learned from his organization's work fighting Huntington's Disease.

Robert Pacifici, PhD and Chief Scientific Officer of CHDI joined us for a keynote address the first night, and inspired all of us with valuable lessons learned from his organization’s work fighting Huntington’s Disease.

This is one of my favorite memories from the trip----Tracy Dixon-Salazar, Doug Nordli and I encountered this rather imposing creature on our early morning walk. What a way to start our day!

This is one of my favorite memories from the trip—-Tracy Dixon-Salazar, Doug Nordli and I encountered this rather imposing creature on our early morning walk. What a way to start our day!

 

The Power of Sharing — Lay and Professionals United!

June 27, 2014 Leave a comment

Whether it’s coming together to share your grief, your fears, your dreams, your resolve, your medical questions, your scientific discoveries or your scientific goals and ambitions, these few weeks have offered several amazing opportunities in our epilepsy community.

I love that increasingly, it seems, professionals are gathering with patients and their loved ones to collaborate and share insights and ideas with one another.  It is so powerful.

Last week, in Minneapolis, 200 family members, researchers and clinicians assembled for the 2nd PAME (Partners Against Mortality in Epilepsy) Conference, co-chaired by our Board Chair Gardiner Lapham and Jeff Buchhalter, MD, PhD, FAAN.

It is rewarding to see this community finally rallying around this issue, and recognizing its importance.  It was also fantastic to see the fruits of all of our labor, and many of your donations reflected on a panel at the conference, at which every participant was a CURE research grantee.

 

CURE Associate Research Director Tracy Dixon-Salazar, PhD, Research Director H. Steve White, PhD and Board Chair Gardiner Lapham gathered in Minneapolis

CURE Associate Research Director Tracy Dixon-Salazar, PhD, Research Director H. Steve White, PhD and Board Chair Gardiner Lapham gathered in Minneapolis

Former CURE Board member and epilepsy advocate Jeanne Donalty speaks about SUDEP to the crowd at PAME. Jeanne was instrumental in creating awareness around SUDEP, helping CURE pioneer its first grants into the subject.

Former CURE Board member and epilepsy advocate Jeanne Donalty speaks about SUDEP to the crowd at PAME. Jeanne was instrumental in creating awareness around SUDEP, helping CURE pioneer its first grants into the subject.

 

And, back home in Chicago this weekend, there’s another gathering — this time of families whose lives are touched by Dravet Syndrome with clinicians who treat these children, and researchers trying to discover the desperately needed answers.  Presented by the Dravet Syndrome Foundation this meeting promises to enhance understanding and collaboration among all concerned parties.  We’re thrilled that a number of CURE-sponsored researchers in this area will be presenting their findings, including Jack Parent, MD, Scott Baraban, PhD, Doug Nordli, MD, Sookyong Koh, MD, PhD, Alicia Goldman, MD, PhD and Associate Research Director Tracy Dixon-Salazar, PhD.

CURE was honored to play a role in each of these meetings, and we’re thrilled at the growing spirit of cooperation and collaboration that offers hope and answers for so many.

At the DSF Conference, I had the pleasure of catching up with Mary Anne Meskis, Executive Director and Lori O'Driscoll, President

At the DSF Conference, I had the pleasure of catching up with their executive director Mary Anne Meskis and foundation president Lori O’Driscoll

 

Families Unite!!

June 10, 2014 Leave a comment

Nearly 600 people turned out to raise awareness of epilepsy and funding for research at the S4 Epilepsy Walk.  It was an all-day event kicked off by David Fradkin, his wife Monica and their 3 children. David shared the struggles his daughter Sarah continues to have with epilepsy and why he is so focused on a cure to rid his daughter of such suffering.

The Fradkin family presented a large check to CURE for $104,000.44—a moment that was topped only by Sarah’s brave and beautiful rendition of the Star Spangled Banner, kicking off the afternoon of family fun.

A 2.74-mile walk, games for all ages including a hula hoop contest, the limbo, golf putting, face painting and so much more. There was also an incredible auction offering one-of-a-kind experiences. Some items are still available — don’t miss out on the final opportunity to purchase.

What the Fradkins and their extended family and community of friends have done for epilepsy is truly remarkable and inspiring—I’m told the kids are already insisting their parents bring them back again next year!

For a full photo album from the day, click here.

A Well-Deserved Honor

June 9, 2014 Leave a comment

In San Francisco on Thursday evening, our Research Director, Dr. Steve White was awarded the Lifetime Accelerator Award at the 4th Biennial Epilepsy Pipeline Conference.  I was so sorry I wasn’t able to be there in person to see this well-deserved honor, but CURE Board member Evelyn Nussenbaum was able to be there and read my tribute (below) to Steve for me.

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Research Director Dr. Steve White with CURE Board member Evelyn Nussenbaum after being presented with the Lifetime Accelerator Award for his commitment and contributions to the field of epilepsy and seizures.

It is so disappointing not to be able to be with you all in person to witness this wonderful, and well-deserved honor bestowed upon Dr. White.

There is likely not much more that I can add about Steve’s remarkable scientific contributions to this field, and his equally remarkable record of excellence in mentorship.  I’m certain that in years to come, future recipients of this award will be so honored because they were fortunate enough to have been inspired and mentored by Steve.

I know Steve in yet a different capacity. There have been many watershed moments in the history of Citizens United for Research in Epilepsy (CURE) that I will never forget.  One was the day Steve and I had our first conversation about his joining CURE as our first Research Director.

I can remember exactly where I was sitting, how the conversation went, and that I had to pinch myself when it was over, because all I could think was “how could CURE, this fledgling organization on the cusp of developing our first internal scientific team, attract the likes of Steve White?”

I’d known Steve for years.  I was well aware of all the attributes that he is being recognized for today. I also knew that there are few people more trust-worthy, more thoughtful, more ethically deliberate in all of his thoughts and actions than Steve White.

Working side by side with him since November of 2011 in his role as Research Director of CURE, he has never disappointed. We’ve asked a lot of him. We’ve asked him to challenge and even shake up certain of the cultural standards in this community. We’ve looked to him for guidance about just how far we can push, and in what areas and what directions. Across the board, he has represented CURE wisely and sensitively to his colleagues and to the public.  And, most importantly, he never loses sight of our end goal: finding the answers our patients and loved ones are so desperate for.

Congratulations, Steve, and thank you for always—without exception—guiding us with kindness, wisdom and your extraordinarily strong moral compass.  We, along with the entire epilepsy community, are so very lucky to have you.

Stay tuned for a few pictures from the S4 Epilepsy Walk this past weekend! It was a fantastic and enormously successful event hosted by dear Friends of CURE, the Fradkin family. More than 500 people attended the event in Southbury, CT for a day of fun in the sun.

 

Time of Year

June 6, 2014 Leave a comment

If you don’t have someone close to you who has just graduated, you’ve likely at least heard bits and pieces of motivational commencement addresses from around the country.  Sentimental nut that I am, I always get a bit teary and reflective.

To fight back those tears, I force myself to think of these ceremonies as commencements, rather than graduations. All the opportunities the future holds. All the promise ahead.

So, I was particularly touched when we received the note below from Ethan Ludmir, who just completed his year as a CURE-sponsored Howard Hughes Medical Institute Research Fellows Program.  Our first crop of ‘graduates’ has completed a year in an epilepsy research lab, and it’s so clear that this truly is a commencement—a commencement of great things! Ethan and Abhijeet Gummadavelli are the future of epilepsy research, embarking on what I am sure will be great careers, and we wish them both the very best!

“I wanted to sincerely thank you for your organization’s support of the projects that Abhijeet and I undertook this year. He and I met at the Med Fellows meeting last week, and got a chance to reflect on the progress, challenges, and achievements of this research year.

Your support has helped spur our interest in epilepsy / neurology research, in terms of both short- and long-term career goals.  The research progress made this year has been exceedingly rewarding, and being a part of the bigger-picture mission to develop preventative and curative therapies for the epilepsies has tremendously fueled my interest in this field.  I am incredibly grateful to CURE for their partnership with HHMI through this program, and please let me know if there is anything I can do in the future to help you and CURE.”

On another note, the other night I had the honor of attending the 2014 Golden Trumpet Awards dinner of the Publicity Club of Chicago, at which our good friends Rick Jasculca and Jim Terman were honored with the prestigious Lifetime Achievement Award for their pioneering three decades of work in public affairs.  Rick and Jim have given so much to CURE since our very first benefit back in 1999—from event support, to PR, to graphic design.  Their friendship has meant so much to CURE and to our success—it was truly heartwarming to see them appropriately honored last night, and to hear Keynote Speaker President Jimmy Carter sing their praises as well!

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2014 Golden Trumpet Awards Keynote Speaker President Jimmy Carter touts the successes of wonderful Friends of CURE Rick Jasculca and Jim Terman

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The ever-humble founders of Jasculca Terman Strategic Communications, Rick Jasculca and Jim Terman accepted the prestigious Lifetime Achievement Award

 

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