Letter from the President

I hope you have been checking the Dravet.org website lately. Almost every day, it seems, there is yet another exciting new epilepsy-related announcement to post there.

For example, in the "Latest Headline News" section, you can read this story, which describes how a new class of RNA interference therapeutics could eventually lead to a treatment for Dravet syndrome and GEFS+. Or this story, which talks about two promising SUDEP studies being funded by NIH research grants. Meanwhile, in the "Current Clinical Trials" section, you can learn about a Phase II open-label safety and efficacy study of the experimental anti-eplilepsy drug brivaracetam which is currently recruiting participants.

Much of what I've read lately gives me great hope for the future of our children. The fact that there is so much research and so many new treatments emerging faster than ever before is very exciting and encouraging. I hope that you are as inspired by this as I am!

Dravet.org remains the premier nonprofit supporting families of children with Dravet Spectrum Disorders. In addition to our research awards that seek to find a cure, we provide many resources and opportunities to connect with and support one another. “Helping the patient while finding the cure” is our mission, and we rely upon your participation and support to accomplish it.

As you read this newsletter, you will see the many ways that our volunteers make a difference by organizing events, collecting needed funds for research and patient support, and raising public awareness about Dravet Spectrum Disorders. For example, nine teenagers organized the Derek’s Dash event in Colorado this past August to support their cousin and friend, Derek Rudawsky, and raised funds that will result in a $50,000 research award to find a cure.

One person can make a difference, nine teenagers can make an incredible difference, and together we can all make a HUGE difference!

-- Laura Cossolotto, President

Third Annual Derek’s Dash is Another Success

The third annual Derek's Dash was another smashing success, with 200 participants raising nearly $40,000 for research into the causes and treatment of Dravet Spectrum Disorders. The 5k walk/run and silent auction was held on August 28, 2011 at Village Greens Park in Greenwood Village, Colorado, south of Denver. Thanks to the tireless efforts of the event's organizers -- all of them 14- and 15-year-old students -- local support for the event was even more widespread than in previous years.

This year's Derek's Dash had something for everyone. In addition to the walk/run and silent auction, there was a bounce house for young children, free snacks and a visit from Chester the Cheetah courtesy of Frito Lay, which also fielded a team for the walk/run, and free full-course lunches for all courtesy of the local Noodles & Company, whose manager has a child with epilepsy. The event was staffed by 50 high-school volunteers, including the entire student senate.

Derek's Dash is the brainchild of 15-year-old Ethan Widoff, whose cousin Derek Rudawsky has Dravet syndrome. Ethan is a born philanthropist; inspired by his father, who served on the board of the Epilepsy Foundation, Ethan wanted his 9th birthday party to be a charity fundraiser for epilepsy research -- a tradition he has continued ever since! Joining Ethan and his younger sister Molly on the Derek's Dash planning committee this year were Ashtyn Reaugh, Connor Sendel, Cole Edwards, Emma Maloney, Abigail Hingst, Darby Soloman, and A.J. Yang, who designed the Derek's Dash logo.

The event brings together family and friends from all across the area, says Edie Widoff, Ethan's mother. "We see the direct impact that Dravet syndrome has on Derek, the daily and hourly struggles he has," she explains. "As an aunt and as a cousin, you feel very helpless. But this helps us do something. We hope that the research that we're funding with the money we raised might someday discover the cure."

Widoff says that the economy hasn't dampened the community's support for the event, which has grown every year as word of it spreads further. "I always feel good afterward knowing that there are so many people who support this," she says.

2012 Derek Rudawsky Research Grant Announced

Dravet.org is pleased to announce our third annual Dravet Syndrome Research Award focused on exploring therapeutic approaches and causative factors for Dravet Spectrum Disorders, including Dravet syndrome and related pediatric epilepsy disorders.

This two-year, $50,000 award is funded in honor of Derek Rudawsky through the loving efforts of his parents, family, and friends, who organize and participate in the annual Derek's Dash. All of the proceeds from this annual event go directly to the Research Award; no administrative overhead is taken out by Dravet.org.

Established and new investigators may apply for this award by February 1, 2012. The winner will be announced in March 2012 and the two-year grant will begin April 1, 2012. Applications will be judged according to relevance, quality of research lab, scientific merit, and potential for new therapeutic approach as determined by Dravet.org's Scientific Research Review Committee, a distinguished group of research scientists.

For application, guidelines and inquiries, contact Sharon Stewart, Interim Executive Director, at stewart@dravet.org or (443) 607-8267.

Inaugural Midwest Dravet Syndrome 5k Run/Walk Chases the Clouds Away

About 300 people attended the Midwest Dravet Syndrome 5K Run/Walk on Saturday morning, September 3, in New Hampton, Iowa, raising $10,000 for Dravet Spectrum Disorder programs and services, and helping to spread awareness about Dravet in the local community.

Up until the last minute, it looked like the race would have to be canceled on account of the weather.  "As we were getting ready to open registration, a lighting storm was coming through the area," recalls Brian Loesch, who along with his wife Debbie, Patty and Alex Dohman, and Brian and Amanda Meyers organized the event. " For a while it looked like we would have to cancel the event, but at 7:45 a rainbow appeared, and by 8 everything had cleared up."

The event, which featured an official timed run to attract local runners, a pancake breakfast, a silent auction, and a brief presentation on Dravet syndrome by Dr. Katherine Nickels of the Mayo Clinic, was the result of six months of hard work by the three families. Much of the planning was done via telephone and e-mail because the Loesches live two hours north of the Dohmans and Meyers, in Hastings, Minnesota.

"Brian and I have taken interest in participating in 5K events and it is something our community enjoys doing as well, we thought that would be an ideal fund-raising event," says Amanda Meyers. After that, it was off to the races -- literally as well as figuratively -- as the families divided up the tasks ranging from getting t-shirts and items for the silent auction to renting the space and setting up registration. The facility where the event was held, the Chickasaw Wellness Complex, generously hosted the registration form on their website and the families spread the word through Facebook.

Businesses in New Hampton donated everything from silent auction items to cash. "We came into the event having already raised over $6,000," says Amanda. A third of that was a generous donation from Mel-Fest, a family nonprofit organization established to commemorate the life of a young woman killed in a car accident eight years ago by raising money to donate to charitable causes.

"The moment at the beginning of the race/walk was overwhelming," recalls Patty Dohman. "Looking out at all the people gathered there for us, our kids, and our cause was amazing. I felt very proud in that moment to be a part of something bigger than myself and also very humbled." On behalf of the Dohmans, Loesches, and Meyers, Dravet.org will donate all of the money raised at the event to Dravet Spectrum Disorder education, family support, and the 2012 conference.

The families say that they are taking a break after all that hard work, but they're already talking about what kind of fundraiser they will hold next year! Stay tuned . . .

Dravet.org Survey Shows Progress on Advocacy Goals

by Joan Skluzacek, Founder

Dravet.org would like to thank the families who participated in our 2011 patient/family survey. Among other benefits, the survey results help us to assess our progress on our advocacy goals and to guide us in fine-tuning the objectives that will help us reach those goals. The information you share with us is valuable and we appreciate your involvement.

Promising results were significant in the goal area of achieving early diagnosis for patients with Dravet Spectrum Disorders. Results of our 2009 survey showed that only 9% of patients received their correct diagnosis of Dravet syndrome from the first neurologist they consulted and a third of them consulted five or more neurologists before receiving this diagnosis. This is changing. Our 2011 survey showed that the percentage of patients with Dravet syndrome receiving the correct diagnosis from the first neurologist consulted has doubled and the number whose diagnosis has been delayed while they consulted five or more neurologists has decreased from 30% to 24%. While this reflects a very positive trend, in reality it may be even better. In 2011, the number of families participating in the survey that represented a patient who is an adolescent or young adult grew to 22%, reflecting a trend we have observed in which many older patients whose Dravet syndrome was missed in early childhood are now being identified. These patients’ families are likely to have consulted a greater number of neurologists on their long paths to diagnosis. If we separate the results for younger patients and older patients, the numbers would likely be even more encouraging.

In 2011, 61% of families surveyed reported that their children with Dravet syndrome received their diagnosis by their third birthday, a significant increase of 11%. Among this group, 18% reported receiving the diagnosis a full year earlier than previously reported. It is encouraging that many more children have earlier opportunities for appropriate intervention. This was reflected in the choice of seizure therapies reported by families participating in the surveys, with increased reports of early use of recommended therapies and decreased reports of exposure to sodium channel blockers.

Dravet.org projects that help promote early diagnosis of Dravet Spectrum Disorders include our comprehensive website, our Collaborative Clinical Research and Comprehensive Care Network (CCR CCN), the sponsorship of professional and family education at our own and other conferences, and the co-funding and contribution of work to the recent special issue of Epilepsia on Dravet syndrome. Opportunities to sponsor these types of Dravet, org programs are available. To help, please contact Sharon Stewart, Interim Executive Director, at stewart@dravet.org. And watch for the publication of more survey results to come.

Vision 2020 Report to Be Issued

Vision 2020, the coalition of scientific and advocacy organizations focused on epilepsy which Dravet.org has partnered with since December 2009, has announced that its landmark study, Report on the Public Health Dimensions of the Epilepsies, will be released in May 2012. The report is being prepared by the U.S. National Institute of Medicine (IOM). Earlier this year Dravet.org founder Joan Skluzacek, our representative to the coalition, testified before the IOM on Dravet syndrome's alarming mortality statistics. "No one has asked our nation to observe a moment of silence or to lower the flag to half-mast for these casualties of epilepsy," she said. "But I ask you please to understand the gravity of the charge we have entrusted to you." 

Remembering Gérard Walmacq

Gérard Walmacq, father to Grégory, aged 29, and husband to Nathalie, passed away on Tuesday, July 12, from a heart attack. Gérard was a passionate advocate for Dravet families and active in many support groups, especially the Alliance de Syndrome de Dravet (formerly IDEA League France). He was a tireless campaigner for integrating children with Dravet syndrome into schools and society.

In 1981, Gérard and Nathalie set up a nonprofit for research and education for young people with epilepsy, which subsequently merged with other organizations to become Epilepsie France. Since then the Walmacqs have stayed in close touch with Charlotte Dravet, Catherine Chiron, and Rima Nabbout. Gérard led by example. He demonstrated his support of research by enrolling his son in the very first stiripentol trials, and Grégory is currently enrolled in a study being conducted by Dr. Nabbout.

Caligor Pharmacy Closings

The Caligor Rx Pharmacy in New York City will be closed on the following dates:

• Wednesday October 19 through Friday, October 21
• Thursday, November 24 (Thanksgiving)
• Friday, April 6, 2012 (Passover Begins at Sundown)

2012 Conference Details

Since 2006, Dravet.org has hosted a bi-annual conference where family members gather from around the world to network together and hear top medical experts share the latest in scientific research relating to Dravet Spectrum Disorders. We will be making an announcement about the 2012 conference by the end of the year, so be on the lookout for this news!

Please Help Us to Help Others

If you, or someone you know, has been helped by our organization, if you received comfort and support from us when you needed it most, if you gained valuable, perhaps lifesaving, information from our team, then you know how important our work is.

And we can only continue our work if we have your support. Please donate now so we can help more families and fund more research.

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