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.

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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!

 

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.

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