The IDEA League is now dravet.org!

We've changed our name to reflect our commitment to being the leading patient advocacy, education, research, and support organization for Dravet syndrome and Dravet Spectrum Disorders.  And as part of this commitment to serve you better, we are significantly upgrading our website in several phases over the next couple of months.  We appreciate your patience as we transition into our new name and website.

Letter from the President, Laura Cossolotto

As dravet.org we are expanding our focus to include children and adults with forms of epilepsy similar to Dravet syndrome. We call this group "Dravet Spectrum Disorders" referring to the related epilepsies that share a similar genetic cause,most commonly mutations in the SCN1A gene.

Increased awareness, expanded education, and research on any one of these epilepsies helps further science leading to improved research and treatment for all. By uniting these disorders under one organization, we have created a powerful team of advocates working together to find earlier and more accurate diagnosis and better treatment for our children.

As a mother, I know all too well the dangers and stress of misdiagnosis. That is why I am working with thousands of other parents and professionals around the world to help our children have a better future.

-Laura Cossolotto,
President

2011 Research Fund Awarded to Dr. Beverly Wical

In April, dravet.org bestowed the Derek Rudawsky 2011 Research Award on Beverly S. Wical, M.D., Medical Director of the Epilepsy Program at Gillette Children's Specialty Healthcare in St. Paul, Minnesota. Dr. Wical's study, "Verapamil as Adjunctive Seizure Therapy for Children with Dravet syndrome," seeks to assess the efficacy of Verapamil as an adjunctive therapy for improving seizure control (generalized tonic-clonic, secondarily generalized tonic-clonic, and clonic or hemiclonic) and to assess signs of dysautonomia before and after treatment. Dr. Wical has found that Verapamil, a calcium channel blocking agent, may play a role altering autonomic tone abnormalities in children with Dravet syndrome and may be a part of the mechanism that leads to improved seizure control. The goal of Dr. Wical's pilot study is to gather data that will lead to a larger, controlled trial.

The two-year $30,000 award was 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 5k Walk/Run and silent auction in Greenwood Village, Colorado. 100% of gifts received from this event go directly to Dr. Wical's research, the Rudawsky Family and dravet.org does not benefit from any of these donations.

"Our son Derek is the sweetest child. He has never had a temper tantrum and loves to smile and give hugs, but he struggles daily from Dravet syndrome," said Zvi and Staci Rudawsky, Derek's parents, after they heard of their award going to Dr. Wical. "We hope that this research will lead to more effective treatments and hopefully a cure for Dravet syndrome. We are fortunate that our family and friends have so generously supported such research."

In accepting the award, Dr. Wical said, "We are very excited to be the recipients of the 2011 IDEA League Research award. As we learn more about dysautonomia in association with Dravet syndrome, we are hopeful that it will increase our understanding of the disorder. With this research grant, we can take the first steps toward investigating a potentially beneficial therapy that is not a conventional antiepileptic medication."

Dr. Wical explained that she first became interested in caring for children with Dravet Syndrome in the early 1990s. "I so longed for better treatment approaches for the kids who had so many seizures and seemed to be slipping away from us developmentally," she recalls. "The clinical course of the disorder is a heartbreaking one, particularly in the early years. I became even more interested in their care because of the wonderful devotion, energy, and love of the IDEA League Tiger Parents. It is a privilege to partner with them in caring for these special children." Dr. Wical joined the staff of Gillette in early 1999. In addition to her epilepsy research, she is also the section leader for Neurology and Sleep Medicine Services and a clinical faculty member at the University of Minnesota's Department of Pediatrics.

The $30,000 award is an amazing accomplishment for just one family, but the Rudawskys aren't resting on their laurels. They are already working hard on the next Derek's Dash to raise money for their second research award! Please join Derek's family and friends at their third annual Derek's Dash 5k Walk/Run and silent auction on August 28, 2011, in Greenwood Village, Colorado.

If you would like to start a Fund of Hope for your family, contact Marilyn Baker: Baker@dravet.org

Medical Journal Focuses on Dravet Syndrome

Epilepsia, the monthly medical journal of the International League Against Epilepsy (www.ilae-epilepsy.org), has devoted a special supplement to its April 2011 issue to "Severe Myoclonic Epilepsy -- Dravet Syndrome: Thirty Years Later."

The 104-page supplement, co-sponsored by dravet.org, features 21 articles that detail the latest research into Dravet Syndrome includes articles by dravet.org's founder, Joan Skluzacek, and the Co-Chair of our Medical Advisory Board, Dr. Angela Black. Here's just a sampling of the wide range of articles included in the supplement:

• "Severe myoclonic epilepsy in infancy (Dravet syndrome) 30 years later," Charlotte Dravet, et al.
• "The core Dravet syndrome phenotype," Charlotte Dravet
• "Cognitive and behavioral characteristics of children with Dravet syndrome: An overview," Francesco Guzzetta
• "The pharmacologic treatment of Dravet syndrome," Catherine Chiron and Olivier Dulac
• "Dravet syndrome and parent associations: The IDEA League experience with co morbid conditions, mortality, management, adaptation, and grief," Joan V. Skluzacek, et al.
• "The impact of parent advocacy groups, the Internet, and social networking on rare diseases: The IDEA League and IDEA League United Kingdom example," Angela P. Black and Marie Baker

Abstracts of all of the articles are available free on the Wiley Online Library.

New Patient Information Service Available Thanks to Piper’s Pals

The friends and family of Piper Wood have raised $30,000 to fund the "About Dravet" section of our new website, which offers life-saving information and critical medical education to families and caregivers of children with Dravet Syndrome. In addition, their gift has paid for the services of a Patient Information Specialist who will work with our Information Committee and Medical Advisory Board to answer parents’ questions, disseminate updated research findings, and help educate parents about the disease.

"Our family feels that we are on the very front lines of understanding Dravet, right alongside the medical community," says Ashley Wood, Piper’s mother. "Raising money to support educational programs through dravet.org is a powerful way for us to partner with researchers to advance our knowledge of this disorder. It is our hope that by furthering knowledge we will further medical advancements which will lead to a cure. There is so much need for research and awareness – a situation similar to HIV/AIDS in the 1980s -- that we are grateful for the opportunity to really help other families like ours learn how to care for their child."

2010 Financial Audit Completed

We are pleased to report that we successfully completed an independent financial audit for 2010, demonstrating our dedication to fiscal professionalism and transparency in the conduct of our business affairs. This industry-standard audit was conducted by certified public accountants, Sassetti & Co, who ensured that we are conducting business within generally accepted accounting principles (GAAP) and that we are in absolute compliance with all applicable IRS 501(c)(3) regulations. Dravet.org has been accorded a coveted five-star ranking by GuideStar users.

Medication Assistance Fund

Dravet.org is pleased to be able to offer financial assistance to families to help offset the cost of Stiripentol. The goal of this program is to help those families who, due to the high cost of Stiripentol, would not be able to purchase this potentially life-saving drug for their child. Our aim is to provide aid to the families with the greatest financial need and to those children who will receive the greatest benefit from Stiripentol based on the available medical literature.  To find out more about dravet.org medical assistance program click here

DC Epilepsy Walk

Team Dravet had another strong showing at this year's National Walk for Epilepsy on the National Mall in Washington, DC.  And the night prior to the walk, dravet.org organized a dinner along with Team Lennox-Gastaut to give families a chance to hear presentations by Dr. Phillip Pearl of the Children’s National Medical Center and Dr. Jack Pellock of Virginia Commonwealth University Health System. This dinner provided an important forum for families to discuss diagnosis, treatments, and life-style issues.

"I enjoy being with other families, especially the ones we talk to on the phone and via Facebook," says Lisa Smith, who along with her daughter Haley, husband Bobby, and twin sons Peyton and Parker were among the founding members of Team Dravet in 2009. "It was fun hanging out in each other's hotel rooms and laughing - These are friends that live far away from each other and only see each other at these dravet.org functions."

Many dravet.org board members joined the 45 person team who proudly carried banners and join thousands of other families walking to raise awareness for epilepsy and the need for more research: Founder Joan Skluzacek and her son Nick, President Laura Cossolotto, Vice President Ryan Day and his son Haiden, board members Kim Skriba and her son Ryan, John McMahan and his daughter Melorah, and Executive Director Marilyn Baker.

The event is also a great way to educate others about Dravet. "The more we can get exposure to our name and to the syndrome by talking to others who are walking along side us, the better," says Lisa. "My daughter was not diagnosed until she was seven. I know there are other children who are out there who have Dravet syndrome, but who have not been diagnosed yet."

Lisa says that events like the National Walk for Epilepsy have been essential for helping her and her family to connect with others to find answers and resources. "Before we had our diagnosis, I felt so all alone. I could not wait to meet another child with the same thing," Lisa explains. "There is such joy in being able to help someone out of that isolating feeling and introduce them to a 'virtual world' of people who are going through the same things. I look forward to the coming years and making the event better for all who attend."

Cookies For A Cure

Paula Lyles of Ohio recently came up with a delicious idea to raise money: a Valentine's Day Bake Sale!

"My goal is to keep Dravet Syndrome on the lips and minds of people and have them join in the fight," says Paula. “With Valentine's Day being a day of chocolate and goodies, I thought it would be the perfect time to hold bake sales around the world to benefit dravet.org’s new website section “Help for Patients & Families."

Paula began by encouraging high schools and local businesses to host bake sale fundraisers around Valentine's Day.  The first year, everyone at Paula's chiropractor's office participated and the local Chevrolet dealership held a two-day bake sale right on the showroom floor helping to raise over $1,000 in one day!

Paula's friend in Utah, Karen Glenn, is also a mother of a child with Dravet. "It's difficult not to catch Paula's enthusiasm," Karen laughed. With the help of her husband, Jerry, family and neighbors, Karen raised over $600 in baked goods. "We sold a pretty wide variety of items, including bread, pies, cookies, caramel apples and hand-dipped chocolates."

Word spread around the world and ITALY began baking for a cure! Simona and Gabriele are part of a group of 50 Dravet families called the FIE – Federazione Italiana Epilessie – working throughout Italy to help families and finance research. With great enthusiasm these two wonderful women organized 10 families to bake cookies to sell in stores on Valentines Day. Their efforts were a huge success raising nearly $5,000 which they donated to dravet.org!   Grande Vittoria!  Grazie I nostril amici!

Passion for the Cause

For nine long years, Ankie and her family sought a diagnosis for her son Gavin.

"We hate it," says Ankie Werdekker. "We hate the seizures. We hate Dravet Syndrome. No one wants to belong to that club. There's a fine line between hate and passion, you can turn hate for the disease into passion for the cause.”

For nine long years, Ankie and her family sought a diagnosis for her son Gavin. When doctors finally confirmed earlier this year that Gavin has Dravet, Ankie felt like she finally knew what she needed to do -- to help Gavin by helping other families with Dravet children in Toronto, Ontario. When he was born, Gavin, the youngest of three boys, appeared to be healthy and happy. But at four months, he began having seizures. Gavin was referred from hospital to hospital as doctors tried to determine what was wrong with him. They tried drug after drug, but nothing made a difference. Ankie, an emergency room and flight nurse, wondered if it might be Dravet or perhaps Lennox-Gastaut Syndrome, but the doctors all replied that he didn't fit the profile.

Finally, after three months and nine drugs, the doctors simply ran out of ideas to try. But Ankie wouldn't quit. "We can't just take him home and watch him deteriorate," she would tell the doctors. "We need to do something."

Finally in 2005, a neurologist in Toronto agreed to put Gavin on a ketogenic diet, which Ankie says was the turning point. Within 48 hours, all the little seizures that Gavin had been experiencing in his hands and feet had completely disappeared. "We had to retrain him to walk, and get him back off diapers," Ankie recalls. Even the number of tonic-clonic seizures dropped, to just one a month.  But still there was no diagnosis. When Gavin suddenly began exhibiting the symptoms of what was eventually diagnosed as abdominal epilepsy, Ankie continued to push for the doctors to perform a biopsy on muscle tissue that had been extracted from Gavin earlier, but met continued resistance. Eventually, after three neurologists, Ankie took her case to a geneticist who listened and agreed that Gavin's condition sounded like Dravet. Early this year he performed a biopsy, and three weeks later, the results came back confirming what Ankie had suspected for nine years: Gavin did indeed have Dravet Syndrome.

Though the diagnosis dashed the lingering hope that maybe Gavin would eventually outgrow his condition, it also meant that Ankie now knew what Gavin needed. He was put on stiripentol thanks to an attentive neurologist at the Hospital for Sick Children in Toronto, and while that bought ten weeks of seizure-free joy, Gavin has since begun to experience seizures again. Soon, he'll be fitted with a vagus nerve stimulator to help with modulating his seizures.

Throughout their long journey to a diagnosis, the Werdekkers never let Gavin's condition stop the family from enjoying life together. "We’ve never let this stop what we want to do," Ankie says. "He might seize, but he'd do it at home too, so why not just go?" An active family, the Werdekkers go hiking, camping, and boating regularly all around Ontario -- and Gavin loves every minute of it. Ankie even jokes that they've seen the inside of every hospital in Ontario by now! On their annual trip to Florida, Ankie has gotten used to explaining to airport security the large bag of pharmaceutical gear and medicines that she carries around everywhere. And throughout it all, Ankie never stopped working; sometimes eight hours in an emergency room or on flight duty, she says, can be a welcome break from the constant stress. Ankie has been busy connecting with other Dravet families in and around Toronto and working with the staff of Epilepsy Toronto.  www.epilepsytoronto.org  to arrange a special session on Dravet for its annual conference in early June. "If you want something done, you ask someone who's busy, right?" she says with a laugh.

Most of all, Ankie is committed to ensuring that other families don't have to wait for a diagnosis as long as hers did. She takes time to educate her colleagues about the signs and symptoms of Dravet. Not long ago, Ankie was on duty in the emergency room when a doctor came up to her and told her that she recently had a three-year-old patient whose seizures kept getting worse. The doctor remembered what she told her about Dravet and so she tested for it. The results of the test haven't come back yet, but even if they come back negative, says Ankie, that's one less thing the child's family has to worry about. And if it's not Dravet this time, it will be someday. "That's a good feeling," she says. "If they can get diagnosed at age three, that six years sooner than Gavin. That's thousands of seizures and so much pain that they won't have to go through."

Send a Dravet Kid to Camp!

Every child should be able to experience the joy of going off to camp. Our special needs children require a special camp if they are to experience this childhood delight. Fortunately, Camp Courageous is a wonderful camp set up for children with Dravet Spectrum Disorders. Unfortunately, not every family can afford to go there. We want to raise $5,000 to give our Dravet children a wonderful weekend at camp - Help us send a Dravet Child to camp!

Camp Courageous is a unique Medical Camping Facility in Kentucky specifically designed for the special needs of children battling serious illness and their families. For the past three years they have been providing a fun-filled weekend at their beautiful camp FREE to our families with Dravet syndrome. This weekend provides much needed joy for our families as well as the unique opportunity of Dravet families spending time together making new friends and giving each other support. We are extremely grateful to the Center for Courageous Kids for the magical memories they have given our children and families.

This year we need to help this wonderful camp give our families a weekend by raising $5,000.PLEASE HELP US SEND A DRAVET KID TO CAMP! Help our incredibly special kids enjoy the precious experience of going to camp. If you, or someone you know, is able to sponsor this opportunity please let us know. And if you would like to make a donation to help us reach our goal, please specify your tax-deductible contribution by marking your gift with the word “CAMP.”

And if you would like more information about sending your child to camp: http://www.thecenterforcourageouskids.org

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.