I posted this on Facebook, but for the rest of you (lovely lurkers included), I wanted to make sure that you hear the news!
The 4th Biennial Professional and Family Conference for Dravet Spectrum Disorders is coming up in August! This conference is one of the best things we have ever attended. This year, it is going to be even more amazing.
An announcement from Joan Vogel Skluzacek-Founder of the IDEA League (now Dravet.org):
The doctors and other speakers who we are inviting to participate as conference faculty are showing remarkable enthusiasm and support for this event this year. Seven clinical epileptologists with special interest and expertise in DS have already agreed to provide small group consultations in addition to giving their talks. Some are going to great effort to work this into their schedules, around their vacations, etc., and they are very willing to volunteer their time and effort to prepare and give their talks and consultations. As a parent and as a Dravet.org volunteer it is very gratifying to get this insight to how much they care and how great their interest and enthusiasm is for doing this work and helping our cause. It is going to be a wonderful conference!
I can not tell you how excited I am about this. The number of physicians attending has really increased, and this is so wonderful to a community that is relatively small. It is totally worth the time and travel to meet with these doctors and have them consult on your child's case. These consultations would cost you thousands of dollars if you met with these physicians at their respective hospitals. Plus, it also provides them more insight into DSD, helping our future. I also want to add, getting to know other Dravet families from around the world is amazing. I would encourage every one, even those who do not have a proper diagnosis, but have this feeling that their child could fit into the category of Dravet Spectrum Disorder or Ion Channelopathy, to try their hardest to attend. The conference is in Minneapolis, Minnesota this year, August 16-19. Plus, for those in the U.S. most travel expenses for attending medical conferences are tax deductible-bonus! Here is the link for registration. You can even invite your therapists and pediatricians, they can get credit for this conference.
This conference is only held every other year, so do not wait. It doesn't matter which organization you are affiliated with, this conference helps all of us, and the doctors who treat our children. We actually attended, last minute, before we even got Cole's proper diagnosis. I knew in my gut that he had Dravet Syndrome, but the doctors were not on board yet. You can imagine with my personality, that I went in to it wanting to learn all that I could, if this was going to be our new life. It can be a little intimidating for newly-diagnosed or undiagnosed parents, but let me tell you this-I am SO glad that we went. I learned more in two days than I had in hours upon hours, upon hours of looking on the internet for two years. For those who have had a diagnosis for a while, or have older children, these presentations will not be as much of a shock to the system, more as an education. I have been in the medical field, professionally, for a long time but I learned things about bone health, genetics and other subjects that I had never learned about at work. It was here that Brian and I introduced the FL-41 lenses to other parents who had photosensitive children. It was here that I started giving iPad demonstrations to anyone that would listen, parents and doctors alike. Some were so impressed by my passion that they wanted to provide iPads for multiple children and now it is a vital part of their charity. Others found that there was a better alternative to bulky, expensive communication devices they were using. We were at the conference when we first got to meet families that had seizure alert dogs from 4 Paws for Ability. It was also the first time that I had really talked to a family that had a service dog (there were 4 there, if I remember-it's been 2 years!). It was here that I learned about Miami Childrens Hospital, and had lunch with most of the Ion Channel Clinic team. You know what a blessing Miami has been in our lives, but I was first impressed by their staff at this conference. It was here that I met Cole's local neurologist, before we moved East, in fact I sat next to him at dinner one night, and also watched him play the piano on another night. You don't get those kind of opportunities at your regular appointments.
The biggest bonus for Brian and I is the friendships that we have cultivated from attending this conference. You can read a little bit about my experience at that first conference here. Hardly a day goes by that I don't have contact with someone who I first met at this conference. We have found our second family. We have gone on trips together, vented to each other about things that no one else could truly understand, laughed and applauded each others triumphs and asked each other questions. It was like going to the magical land of Oz and realizing that everyone else was there to see the wizard too. We formed an instant, dynamic family of sorts.
Okay, okay I will stop singing praises. I think you get the picture:) If you want more information, e-mail me or private message me on Facebook. I hope to see a lot of you there, and hope that you can get some answers to your questions.