Hope

December 19, 2014 Leave a comment

CURE’s research efforts continue to spread well beyond our borders, as illustrated by the awards we have just announced for the second cycle of 2014 and the first of 2015 – grants that support research not just in the US, but also in the UK, Germany, Austria, France, Italy, Israel and Canada.

CURE grants now reflect work taking place in 13 different countries outside the US, and we couldn’t be more pleased with the breadth of our reach, and the impact of our research. Thanks to so many of you, we continue to expand our reach and our impact globally.

Each year the quality of the science improves. The competition for CURE Awards gets stiffer and stiffer. Selecting the grants to fund becomes more and more challenging.

One of the hardest things we do at CURE is to inform grant applicants that we are unable to fund their projects. It pains us, because we know that there is never a straight, predictable path to finding cures—we know that answers may even lie in those projects we can’t support. We do the very best we can to select the most promising research, guided by the expertise of our external scientific reviewers, our internal science team, our Scientific Advisory Council and some magnificent lay reviewers who help ensure that the work we fund is patient-centered and cure-focused.

We hope it is clear how conscientious we are in stewarding your investments in this cause. Without you, none of this critically important work would happen, so you should join us in our pride of the impact we are having. We honor your support and count on your continued trust in our steadfast mission, and in our commitment to supporting the epilepsy research that can truly transform and save lives.

CURE is now the largest private funder of epilepsy research in the world. We owe that to you and our growing community of supporters. But we still have to leave so much hope out there–so many meritorious research projects without funding–simply because we do not have the dollars needed to support them.

This season, please consider continuing and growing your support of CURE, because this is a doubly meaningful time to donate—a treasured member of our Board of Directors will match every dollar donated through December 31st, up to $250,000!

Scientific research is an expensive endeavor. We can’t pretend otherwise. And epilepsy is a particularly complex disease, with a myriad of causes, complexities and solutions. But we continue to make an enormous difference, and it is due to you and a growing community of supporters and believers that we are able to do so.

Your involvement keeps hope alive— hope for those of us who are personally touched by epilepsy that answers will be found; and hope for the scientists and clinicians who have chosen to focus in this area, that we are committed to growing our support for their efforts.

This time of year, as always, we pause to appreciate and celebrate all of you and our collective ability to transform and save lives. As our new mission statement affirms, our commitment is unrelenting. Our dedicated staff, our Board of Directors and our family of volunteers join me in thanking you for caring, and for sharing our belief in the extraordinary power of research.

We send you all our warmest wishes for a happy and healthy holiday season!

 

 

 

Sleepless in Seattle

December 10, 2014 Leave a comment

After a sleepless, though also amazingly energizing, annual meeting of the American Epilepsy Society in Seattle, it is fantastic to be back home and take stock. We saw many of our investigators, reviewers, advisors, and partners–new and old–in industry. Promising relationships were forged and the opportunities to advance progress abound. Many thanks to our CURE team, who were there in full force showcasing the incredible advances that are coming out of our CURE research and carving the way for even more.

As always, this is the occasion at which we announce our new CURE awards—-the culmination of so much hard work on the part of our team, so many volunteers, and your generous support. The science just keeps getting better and better, and we couldn’t have been more excited to announce a record-breaking number of grants this year. Thank you all!

Check back in early 2015 for a full list of our grantees and awards!

The grantees who were able to join us at our reception Sunday night were ecstatic to receive their awards!

The grantees who were able to join us at our reception Sunday night were ecstatic to receive their awards!

Board Chair Gardiner Lapham speaks about past successes and future plans for the PAME Conference.

Board Chair Gardiner Lapham speaks about past successes and future plans for the PAME Conference.

It was great to run into good friends Nico Moshe, MD, Jeff Noebels, MD, PhD, and Tom Sutula MD, PhD

It was great to run into good friends Nico Moshe, MD, Jeff Noebels, MD, PhD, and Tom Sutula MD, PhD

At the CURE booth with Walter Koroshetz, MD, Acting Director of NINDS

At the CURE booth with Walter Koroshetz, MD, Acting Director of NINDS

Talking global: it was great to see our friends, fellow mothers and research advocates, who traveled all the way from Italy.

Talking global: it was great to see our friends, fellow mothers and research advocates, who traveled all the way from Italy.

Erin Dowland and Liz Higgins from CURE pose by our booth.

Erin Dowland and Liz Higgins from CURE pose by our booth.

Longtime Friend of CURE and research advocate Barb Kelly with Associate Research Director Julie Milder, PhD, keep an eye on our table - the EGI swag went like hotcakes!

Longtime Friend of CURE and research advocate Barb Kelly with Associate Research Director Julie Milder, PhD, keep an eye on our table – the EGI swag went like hotcakes!

Holiday celebrations and sincerest thanks

December 1, 2014 Leave a comment

While it shouldn’t, it always comes as a surprise to see the trees without their leaves, and hear conversations turn to holiday plans and family gatherings.  The months since our Chicago benefit with James Taylor have passed quickly and all of us at CURE have been busy with events in New York, Boston and all around the country, as well as with scientific meetings, conferences and grant reviews.

I’m looking forward to attending the American Epilepsy Society (AES) meetings in Seattle this week, and learning about the scientific advances happening around the world.  Our growing family of CURE researchers continue their diligence and work unceasingly towards finding cures for the epilepsies—they’ll be sharing their findings as well, and I look forward to seeing many of them showcased at the meeting. If you’re at the meetings, please join us Sunday evening when we announce, and celebrate, the next round of amazing CURE Research Awards!

In the midst of these achievements and hard work, we pause to offer heartfelt thanks to all of you.  Our momentum and successes would not be possible without the support and dedication of so very many of you–our donors, volunteers, researchers, grant reviewers and our tireless staff.

We continue to make meaningful strides, but the road ahead is still long and twisted.  It’s a rare day when I am not contacted by, or learn of, a patient whose life has been forever affected by an epilepsy diagnosis.  Ella’s story is just one example.  She is counting on us, as her seizures continue despite the many treatments her doctors have tried.  Her parents travel the country seeking opinions, while anxiously awaiting the advances in research to provide the answers that could change the course of Ella’s life.  The answers that your support will help to find.

Ella Cunneen began having seizures just days after her first birthday - now age 5, she and her family are still struggling to find the best treatment.

Ella Cunneen began having seizures just days after her first birthday – now age 5, she and her family are still struggling to find the most effective treatment.

At this time of year, and always, we thank you for all that you do to make a difference for Ella and for so many more.  Because of you, they have hope.

From all of us at CURE, we hope you enjoyed a healthy and happy Thanksgiving holiday and offer our warmest appreciation to each and every one of you.

The end of a chapter

September 19, 2014 Leave a comment

Board member Connie Milstein hosted a beautiful farewell reception in Washington DC for Dr. Story Landis, who is wrapping up 11 years as Director of the National Institute for Neurological Disorders and Stroke (NINDS–an institute of the NIH, and the lead institute for epilepsy research).

Over the years we have worked very closely with Story to advance epilepsy research and her innovative, creative and strategic approaches will be deeply missed.

Dignitaries, NIH representatives and members of the epilepsy community joined us in wishing Story all the best in this next chapter of her life. We hope she will stay in touch — she has been a terrific advocate for all of us!

Here are a few shots from the evening…

 

Dr. Story Landis

Dr. Story Landis

Senator Durbin (D-IL), with Story and Connie Milstein

Senator Durbin (D-IL), with Story and Connie Milstein

Peggy Hamburg, FDA Commissioner, with Ellen Sigal (Cancer Research Advocate)

Peggy Hamburg, FDA Commissioner, with Ellen Sigal (Cancer Research Advocate)

Tony Fauci (Director, National Institute of Allergies and Infectious Diseases) joined us

Tony Fauci (Director, National Institute of Allergies and Infectious Diseases) joined us

Steve Roberds (CSO of Tuberous Sclerosis Alliance) with CURE's Steve White

Steve Roberds (CSO of Tuberous Sclerosis Alliance) with CURE’s Dr. H. Steve White

Water Koroshetz--who will step in as Acting Director when Story leaves---with Brandy Fureman, Epilepsy Program Director

Walter Koroshetz–who will step in as Acting Director when Story leaves—with Brandy Fureman, Epilepsy Program Director

Walter and colleagues enjoying a light moment

Walter and colleagues enjoying a light moment

She should have taken the Ice Bucket Challenge…

September 9, 2014 Leave a comment

This coming weekend, our fearless (some might say crazy) leader, Gardiner Lapham, is running a relay race to benefit epilepsy research.  Her team of 12 women will run 200 miles — from Cumberland, MD to Washington, DC — without stopping and through the night.

Over the past several years, Gardiner claims that her major cardiac activity has consisted of running after kids, but she was inspired to train to do this because of Virginia, an adorable and tough little girl who has struggled with epilepsy for more than 10 years, has had over 10,000 seizures, and tried countless medications.  Her mom Kate has organized their team to raise awareness and funds for CURE and epilepsy research.

Kate, Matt, Ned, Gardiner, Gilbert, Virginia

Kate, Matt, Ned, Virginia and Gilbert Cooper with Gardiner at the National Walk in DC. Bet these women didn’t foresee a 200 mile run in their future back then!

Gardiner is also doing this race for her son Henry.  More than 6 years after his death, he is the reason for Gardiner’s passion for epilepsy research and understanding, especially in the area of sudden unexpected death (SUDEP).

To date, their team has exceeded their fundraising goal of $20,000, raising more than $22,000!  All funds will advance the work of CURE, and you can still donate by clicking here. I truly hope you will support Gardiner, Kate, and the 10 other devoted ladies in this crazy endeavor!

We’ll be sure to report back next week with how the team did, and their grand total raised for epilepsy research!

To me, dumping a bucket of ice water over my head sounds a whole lot easier…….

Also running through Washington, DC is the Army 10-Miler race! On October 12, Capt. Pat Horan, a loyal CURE supporter and army veteran who suffered traumatic brain injury (TBI) and consequently, post-traumatic epilepsy (PTE) after a tour of duty in Iraq, is putting together Pat’s Team Runners and Supporters. To join the team and participate in a terrific cause, click here. Thank you to the Horans for helping raise awareness about the realities of TBI and the many challenges our veterans face upon returning home.

Pat at a previous Army 10-Miler. We're cheering for him this year!

Pat at a previous Army 10-Miler. We’re cheering for him this year!

In case you missed it, this past Sunday was the Joey’s Song Concert, hosted by the Madison Friends of CURE and The Joseph Gomoll Foundation. Six hundred supporters enjoyed an evening in Madison with featured performances by two bands, a silent auction and raffle. More than $50,000 was raised for epilepsy research!

Our deepest gratitude to Eileen Sutula and Mike Gomoll for all their hard work organizing this successful event the last two years.

marquee

The marquee at the Majestic Theater in Madison, WI advertising the Joey’s Song concert! It was a sold-out crowd.

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One of the bands, Chaser, onstage Sunday night.

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!

 

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