Letter from the President

Happy New Year and a big thank you for working with our children and families this past year as we seek to find a cure for Dravet syndrome and the related epilepsy spectrum. Together in 2011 we accomplished a lot -- including launching a new and improved educational website, and funding two key research studies, initiating Patient Information and Ask the Expert services for our families. As we look ahead to what 2012 brings, we pledge to do even more to further awareness about Dravet Spectrum Disorders so that children are diagnosed quickly and receive needed treatments.

Our lead article in this newsletter is about our upcoming Family Medical Conference in August, held every two years and the largest gathering in the world focused on Dravet Spectrum Disorders. Our website and upcoming newsletters will feature details about speakers and programs, and registration will be available soon. We hope that you will plan to join us.

We will continue to expand our work with our Centers of Excellence to support comprehensive treatment for Dravet patients and are planning several webinars and grand rounds for medical professionals to increase awareness and improved treatments.

This year, we will once again participate in the National Walk for Epilepsy, to be held March 31st in Washington, DC and in cities around the nation. If you would like to be a part of our team, please register on the National Walk for Epilepsy website or contact Lisa Smith, Team Captain, at haleyismyhero@gmail.com.

Thank you to all of our donors and volunteers, who make what we do possible. A special thank you to our Funds of Hope, which funded patient educational materials and services, our Research Awards, and our family camp.

Please consider setting up your own Fund of Hope or making regular credit card donations via our website. Every contribution brings us closer to achieving our mission of helping the patient while finding the cure.

Best wishes for a blessed and prosperous 2012!

-- Laura Cossolotto, President 

Dravet.org Announces Date, Location of 2012 Family Medical Conference

Dravet.org's 2012 Family Medical Conference will be held Thursday, August 16 through Sunday, August 19 in Bloomington, Minnesota at the Doubletree Hotel, near the Mall of America, which features an indoor amusement park, a walk-through aquarium, and much more. Special room rates will be available for conference participants at the Doubletree Hotel.  We will be sending you further details very soon about how to make your hotel reservation and to register for the conference.

We hope you will join over 200 family members gathering from around the world to network together and hear top medical experts share the latest in scientific research relating to Dravet Spectrum Disorders.

The conference is the largest gathering of patients, families, physicians, and researchers from all over the world focusing on Dravet Spectrum Disorders and will feature:

• Small group consultations for patients and families
• Medical experts who will provide latest updates on treatments
• Programs for children and families, which will feature the latest research and treatments
• CME courses and other programs for physicians, networking, and opportunities for exchange of medical data and research findings

SCN1A Mutation Affects Circadian Rhythms in Dravet Patients, Researchers Find

A team of researchers at the University of Washington believe that they have found the reason that people with Dravet syndrome experience sleep disorders. Essentially, a heterozygous loss-of-function mutation in the SCN1A gene shorts out the brain's natural circadian "pacemaker."

Reminder: Research Grant Deadline is February 1!

Established and new investigators may apply for our two-year $50,000 Dravet Syndrome Research Award by February 1, 2012. The award is focused on exploring therapeutic approaches and causative factors for Dravet Spectrum Disorders, including Dravet syndrome and related pediatric epilepsy disorders. The 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.

Need Help Getting ONFI (Clobazam) at Your Pharmacy?

As of January 3, the oral antiepileptic drug ONFI (clobazam) is available in tablet form by prescription in the United States, according to its manufacturer, Lundbeck. ONFI is available to patients at retail pharmacies with a prescription from a healthcare professional. For patients who need assistance accessing ONFI, Lundbeck's ONFI Support Center (855-345-6634) is available to help with benefits investigation, prior authorizations and is responsible for Lundbeck’s patient assistance program, which includes co-payment assistance. Services are available from 8:00 a.m. to 8:00 p.m. (ET), Monday through Friday, excluding holidays. 

Australia's Largest Child Neurology Conference to Address Dravet Syndrome

The Joint 12th International Child Neurology Congress and 11th Asian and Oceanian Congress of Child Neurology, which is billed as "the largest child neurology congress ever held in Australia," will be held May 27-June 1, 2012, in Brisbane and will feature a session entitled "Dravet syndrome or EFMR: what is the difference?"

Marathon Establishes Ben Bryan Fund of Hope

This past August and September, Andrew & Aimee Bryan organized Running for Ben to raise funds for the Ben Bryan Fund of Hope, in honor of their son who has Dravet syndrome. The Bryans partnered with Top of Utah, which held half and full marathons in August and September. Each race had approximately 2,400 runners as well as many spectators and supporters, and raised $5,000 for the fund.

"Our two goals were to raise money for research and also raise awareness," says Aimee. "We felt like we accomplished both of these goals. We were thrilled with the $5,000 raised and are looking forward to making it an even bigger event in 2012.

Ben had his first seizure when he was 5 1/2 months old. "Like so many other parents, we were told it would most likely be his only one," recalls Aimee. "When he started developing other types of seizures and no medicines were helping, we, along with the neurologist, concluded that he would most likely not grow out of this condition and continued to try new medications and therapies. ln March 2011, we bought a helmet for Ben since the little myoclonic seizures that he was having 100+ times a day kept throwing him to the ground and giving him bloody noses, black eyes, bumps and bruises. The helmet has been a lifesaver. In May 2011, we were finally able to have a genetic test done to test for Dravet syndrome and it came back positive. We are happy to finally have a name for it but at the same time, our hearts break when we think of the hard journey ahead for our little guy. He has endured all of this with a patient heart and is the epitome of sweetness. We pray and hope for the best, but no matter what happens, we will continue to thank Heaven for him every day."

Click here to donate to Ben Bryan's Fund.

Dravet Family Weekend at the Center for Courageous Kids

by Kim Skriba

Please join us for the 4th annual Dravet family weekend camp at the Center for Courageous Kids (CCK) in Shelbyville, Kentucky, October 12-14, 2012.

CCK is a year-round medical camp facility that serves children with life-threatening and chronic illnesses and disabilities at no cost to families. They have illness-specific Family Retreat Weekends throughout the fall and spring for campers between the ages of 3 and 17 and their parents and siblings of all ages.

At camp, They have indoor swimming, guided horseback riding, bowling, a rock-climbing wall, cooking, a beauty salon, a wood shop, boating and fishing, and many more activities. Their goal is for campers to experience a weekend of camp where they can participate in all of the activities while feeling safe, respected, and loved. It is also an opportunity for families to network and support each other. To sign up for the family weekend, please go to www.courageouskids.org and click on Camper Application. There are 30 spots available and we would like to fill them all with Dravet families.

During the Family Retreat Weekends, each family will be housed in a private room with either 6 or 8 beds and a private bathroom. All linens, towels, and food are provided for the weekend. 

The number-one rule of the founder is no family or camper will ever be charged to attend. CCK functions solely on donations as they partner with groups and organizations to offset the cost of attending the camp. CCK has asked that we help with this cost by raising $300 per family for our family weekend. We appreciate all that CCK does for our families. If you would like to help with fundraising efforts, or know of an individual or company that would like to help sponsor our family weekend, please contact Kimberly Skriba at kim.s @idea-league.org. Thanks to Dravet.org, as they are supporting our efforts.

The Dravet Fall Family Retreat Weekend is scheduled for October 12-14, 2012. Apply online at www.courageouskids.org or call CCK Camper Recruiting at (270) 618-2912 for more information.

Take Heart, Take Part in Cookies for a Cure!

This Valentine's Day, families will be rolling up their sleeves, rolling out cookie dough, and "taking a bite out of Dravet syndrome" as part of Dravet.org's second annual Cookies for a Cure bake sale fundraiser. All proceeds from this event will go to support the mission of Dravet.org, promoting and funding education, family support, and medical research to find cures for Dravet Spectrum Disorders. For more information please contact Paula Lyles at pal601@aol.com or (440) 331-3186. 

Pennsylvania Newspaper Profiles Two Dravet Families

Jennie Stormes of Hope Township, Pennsylvania, says that until she was able to get stiripentol for her son Jackson, she had never really met him.

Support Dravet.org by Going Green

To all our friends, families, and supporters who live in CT, NY, NJ, PA, MD, or IL please consider supporting Dravet.org by signing up for GREEN affordable ENERGY at our new Viridian Fundraising site, www.viridian.com/dravet.

Through this unique fundraiser, Dravet.org receives income from Viridian each and every month that a supporter pays their utility bill, while the supporter is able to save money over time. This is made possible through energy deregulation which allows electricity and natural gas customers the opportunity to choose their supplier. You can be assured that your utility company will still deliver the same reliable energy you've always had and service your needs, as well as provide you with the same bill you're familiar with. Review and choose the plan that is best for you on our site, it's SIMPLE, FAST, and FREE. In just a few minutes, you'll be on your way to cleaner, more affordable energy for your home or small business, and the best part is you'll be supporting Dravet.org.

For more information and to start supporting please visit www.viridian.com/dravet.

3rd Annual EveryLife Art Contest

RareArtist.org and the EveryLife Foundation for Rare Diseases invite you to participate in the third annual EveryLife Art Contest. The contest provides a showcase for artists affected by rare diseases to express their talent and unique stories. Two Grand Prizes will be awarded in each age group (Children 5-11, Teens 12-17, and Adults 18+). A limit of 3 pieces of art may be submitted per person. Entries must be received by 5pm PST on Tuesday, January 31, 2012. See the full details here. 

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. And please consider setting up periodic contributions via your credit card.

Correction

In our Winter 2011 appeal letter, we neglected to credit the photographer. The photo was taken by Hezlep Photography, www.hezlepphotograhy.com. We regret the error.