Dravet.org (formerly the IDEA league) has helped us and our daughter tremendously. We attended their first conference in Greenwich, CT, in 2010, which led us and her doctors to get her on the proper medications to better control her seizures. We just returned from their 2012 conference in Minnesota and have learned much more on what to expect as our daughter enters her teenage years. This is a great organization.
The IDEA League changed our lives. Before his diagnosis, our son was having many types of seizures, and more of them each day than we could count. There was almost never any real recovery between them. He had stopped using the few words he’d had left upon starting kindergarten. He was withdrawn, in part due to frequent migraine headaches. He struggled with such severe tremors that he couldn’t walk safely or feed himself. He had little interest in eating and was losing weight. He couldn’t focus on much of anything or even get a good night’s sleep. The doctors that had been seeing him were confused and could not explain what was happening to this child who had once seemed the picture of health. None of the treatments they tried worked. Now his seizure control is amazing by comparison. He meets most of his own mobility needs by walking. He eats heartily and is growing. He is making slow, but clear progress in his development and recovering some lost skills. He and his siblings have friends who 'get it' and they are happier people. This is the difference that an accurate diagnosis, appropriate treatment, coordinated comprehensive care and an atmosphere of collaboration and support have made in the life of one family dealing with Dravet syndrome.
This organization has changed our lives. The conference I attended just after my daughter's diagnosis at age 9 provided critical information to help us make her life better. I learned about Dravet syndrome, medication, social services and support services. Our family has made friends with other Dravet families and we continue to join in walks, conferences and other volunteer and support opportunities. This organization provides a sense of family and acceptance that is so vital to dealing with this devastating diagnosis.
This organization is a great support to my grandchild and family. They have been very helpful in giving a list of specialists and articles about Dravet Syndrome (SMEI). We attended the conference to help with our grandchild and it was fabulous. It was very exciting to hear about new research and hear the experts.
I can't imagine where I would be with out the help of the IDEA League. They have not only given me the knowledge of my sons condition, they have given me the support we needed through the continuous friendships that we build everyday with those going through the same thing. They continue to raise awareness, educate, raise funds for research and for that I am grateful!!!
The IDEA League has been an amazing resource for me and for our family. Thanks to the conferences that they put on, we have had access to consultations with top experts and to latest information about this truly challenging condition. The IDEA League has also brought us together with hundreds of families around the world who are dealing with the same issues that we face. From them, we have gained hope, strength, support, understanding and friendship.
Our daughter has Dravet Syndrome. The IDEA League has been critical in getting her diagnosed and on the correct medicines. This has literally been a lifesaver for us. The support is fabulous and it is so exciting to hear about the research that they are funding! We have attending all three medical conferences and the information that we have learned is amazing. We can't wait for the next one! We don't know where we would be without the IDEA League.
The IDEA League has been a source of information and comfort to us. We were alone in our journey with Dravet Syndrome for 18 years, and to finally have a safe place to vent, to encourage, and to be a part of has made a world of difference in our lives. We are so grateful for the support and advocacy, and well as the constant push for research and developement to help make all of our lives better. All of the people involved, from the board to the doctors to the volunteers, as well as the caregivers, parents and kids hold a very special place in our hearts.
My son was one of the "undiagnosed" for too long, put on all the wrong medications for Dravet syndrome, until we found the IDEA League. The network of parents, doctors, and researchers helped us find a doctor, get a diagnosis, find the right medicines, and figure out how to handle the devastating news as a family. Through the family support network we've met several families experiencing the same journey we are, and have received countless tips and suggestions about how to handle the seizures and everything else that comes with this syndrome. We are able to stay on top of recent research, advocate more efficiently for school support and insurance coverage, and deal with the ever changing medical needs of our children. The support the IDEA League offers goes so much farther than any other organization we've come across, and we would be lost without the IDEA League's assistance!