Information on this disorder is as rare as the disease itself. It is of life-saving importance for parents get up-to-date information to ensure a correct diagnosis and appropriate care for the child. Empowering parents by providing them with comprehensive educational materials and answers to their questions is critical to help save the life of their child and help us accomplish our mission.
Because many Dravet spectrum disorders do not respond to any existing epilepsy treatment, finding an effective treatment and cure requires research specifically focused on Dravet. All Dravet.org-funded research funding applications undergo a peer-reviewed competition to determine which ones are most worthy of being supported.
Families are invited to organize events and other fundraising efforts in their community to raise money to fund a program of their choice helping other families, or fund a $30,000 two-year research study. Both programs and research awards will be named in honor of your family or loved one. All tax-deductible donations are collected and managed by Dravet.org and safely reserved in the family's name.
Research Awards will be selected after a rigorous review of applications by our Scientific Research Review Committee. This committee is composed of distinguished scientists and medical researchers who use an unbiased and industry-standard competitive scoring system. Families can be confident that the Scientific Research Review Committee will select only the best research studies.
Create a meaningful legacy for your family and set up your family's Fund of Hope by contacting us at email@example.com.
The following families of great heart and vision have made a philanthropic commitment to help others by raising money for Research, Education, and Patient Support Programs:
After many years, Zach Moccia was finally diagnosed with Dravet Syndrome. His mother, Leslie, established this Fund of Hope to support patient and physician education activities. Increased awareness can result in faster accurate diagnoses!
Joan and Paul Skluzacek have established this Fund in honor of their son, Nick. The Fund shall be used to provide funding to support the patient education and advocacy as part of the development of more effective treatments and finding a cure for Dravet Spectrum Disorders.
Elissa is our second daughter, and was perfectly healthy at birth. When she was six months old, she had her first tonic-clonic seizure. It lasted just over 30 minutes. It seemed to last a lifetime, but would not be the longest seizure she has had to endure. In February 2012, almost one year to the date of Elissa’s first seizure, we received the genetic test results revealing a mutation of the SCN1A gene, supporting the diagnosis of Dravet syndrome. The anti-seizure medications help, but do not completely suppress the seizures. We know that it is impossible to predict what Elissa’s cognitive and physical abilities will ultimately be, and are anxious about what the next few years will bring. Instead of focusing all of our efforts on helping Elissa manage symptoms, we wanted to look beyond current limitations and be a part of supporting the development of more effective treatments and helping to find a cure. We feel very strongly that advancing scientific research has the potential for the greatest impact on Elissa’s future and others suffering with Dravet syndrome. Establishing this Fund of Hope is a way for our family to help put aside the feeling of helplessness that comes along with the fact that Dravet syndrome has the potential of drastically impairing Elissa’s quality of life. It is a way for us to change helplessness into being hopeful – it gives us an opportunity to “Choose Hope.” Thank you for any contribution you are able to make and joining us in Elissa’s Journey. You can follow Elissa’s progress on www.ElissasJourney.com
"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. 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."
This past August and September, Ben's parents organized Running for Ben and 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. "Our two goals were to raise money for research and also raise awareness. 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." - Andrew & Aimee Bryan
"Our daughter Sydney was only 2 months old when her struggle with Dravet began. She currently has hundreds of seizures daily and has so many triggers we can barely leave the house with her. Our desire is to help fund research that will find a cure and give Sydney a better quality of life. We are so thankful for a wonderful community, family, and friends who give us so much support. Thank you, 'Sydney's Shakers'!" – Paul & Julie
"Our family feels that we are on the very front lines of understanding Dravet, right alongside the medical community. Raising money to support educational programs at the IDEA-League 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 (similar to the AIDS situation in the 80’s) that we are grateful for the opportunity to really help other families like ours learn how to care for their child."
Piper’s family and friends have already raised $30,000 to fund the "About Dravet" section of our website giving life-saving information and critical medical education to families. In addition, their funding has paid for a medical expert to answer parent’s questions, disseminate updated research findings, and further parent’s understanding of the disease.
"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. We hope that research will lead to more effective treatments and hopefully a cure for Dravet syndrome. We are fortunate our family and friends have so generously supported such research."
Last year Derek’s family and friends raised $30,000 to fund the Derek Rudawsky 2011 Research Award which began in April 2011. It was an amazing accomplishment for just one family. And now they are working hard again to raise money for their second research award! Please join Derek’s family and friends at their third annual DEREK’S DASH, a 5k walk/run every August in Colorado – www.dereksdash.org
“Trey is such a loveable child. He loves to give kisses and hugs, and can melt your heart with his amazing smile. While biologically Trey is 6 years old, his development is comparable to that of a two-year old. When we look at Trey we don't see a child with a disability, we see a child with a zest for life no matter what obstacles he may encounter. He may battle Dravet syndrome but he still manages to do all the things many take for granted. He recently learned to ride a bike, he plays baseball, and he loves to swim. He has changed us as parents and we are so blessed for everyday we have with him.”-Ron & Mollie
"Alex hit a major bump in the road - he is now having seizures every day and he has run out of options. I can’t give up on him. I made a promise to him to do everything I can to give him a seizure free life and the only way I can do this is help the foundation fund more research."
Alex’s parents are planning community fund raising events to help them reach their goal. To learn more about Alex and his struggles against Dravet: www.AChanceForAlex.com
"Because we had to wait 7 years for an accurate diagnosis, we don’t want other families to have to suffer what we went through. Being a proactive family, we are willing to do the work needed to help create positive change in this world; and funding research to find a cure for Dravet is the change we are working for. We are so lucky to live in a caring and compassionate community that enables us to raise this money."
Please join Haley’s family and friends at their upcoming fundraising events in White Stone, Virginia: Crop Because You Care (May 7) Zumbathon (May 22) Haley’s Walk & Dinner Gala (October 1) www.haleyismyhero.com
All monies donated to the Ryan Smith Fund will go directly to sending Dravet children to camp. What could be more meaningful than to give a most precious childhood experience - Going 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.
Please consider joining Kim and Ryan for fun at camp! www.rallyforryan.net
For more information on Camp Courageous: www.courageouskids.org
“Shelby fights constantly against seizures and debilitating setbacks. The emotional roller coaster of new medications that turn into disappointments often leaves our family discouraged. We remain hopeful that new research will lead to better treatments, and a cure. We want to be a part of that hope by raising funds for Dravet specific research. We are so grateful to God and dravet.org for the opportunity to award a grant in Shelby's name, but we need your help to reach $30,000. Anything you feel led to give would be appreciated. “-Charles & Lauren
For more information on Shelby and her life with Dravet syndrome, please visit: www.shelbysfastfeet.com.
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