I am beyond grateful for the Dravet Syndrome Foundation. They have helped us in desperate times when no one else could. Having a child with Dravet is very expensive. The DSF knows this and has helped countless families over the years, including my family. They are the number one place I direct doctors and other professionals to find the most information about Dravet, as well as the latest research. We would be lost without them, truly! We love you DSF!
So fortunate to know of this great organization for children with Dravet and their parents. It is so helpful to be able to go to one spot for the latest research info, parent support, financial assistance and more,
thank you Dravet Syndrome Foundation!
The Dravet Foundation was amazing at helping meet our needs! We needed a nighttime activity monitor to help us determine what types and how frequently our 5 year old daughter was having seizures at night. DSF accepted our application, called us to say that we were selected for the grant and then completed the order 3 days later! It feels great to have them on our side when Dravet makes us feel all alone sometimes.
Review from Guidestar
I am a mother with children who have uncontrolled seizures. The Dr have pretty much given up on my kids and have told us to prepair for their deaths. This group has given me some place to turn to learn more so that I am able to bring new information to the table when speaking with their Doctors.
Dravet syndrome Foundation is a hugely professional charity, with an incredibly knowledgeable and dedicated board. They support families internationally - families such as ours, by helping with an adaptive stroller, which has made a huge difference to us.
They also give us hope for the future with their impressive research programme. Thank you
As a parent of a child with Dravet Syndrome, Dravet Syndrome Foundation gives us hope that research into Dravet Syndrome is a priority. The foundation also gives us a support network as well as providing equipment which makes an enormous difference to the individual which then has a positive effect on the whole family - For us, our daughter was granted an iPad. The whole process was made very easy for us (which also makes a huge difference in our life) and we had a very quick and personal response. The iPad has made a huge difference to my daughter and I would like to thank Dravet Syndrome Foundation for this and the hope that they give us.
The Dravet Syndrome Foundation is an amazing organization that has changed our lives for the better. Our son Miles is 5 yrs old and suffers from Dravet Syndrome. The Dravet Syndrome Foundation recently awarded Miles an Adaptive Stroller. This is something that our insurance had denied and we had not been able to afford ourselves. As Miles has gotten older and outgrown a regular stroller our entire family has suffered as we have not been able to enjoy anything that involved long walks, the outdoors etc... Miles tires easily and can have a seizure at any time. We used to enjoy museums, the local zoo, even walks around our neighborhood but now that Miles is 85 lbs I can no longer carry him long distances and this puts him in great danger if we were to get more than a block away from home and he were to have a seizure. With the award of this adaptive stroller we can now enjoy all of those things again :) I can now feel safe in taking him out and know that if he does have a seizure he is strapped in and I can get him home safely. Our entire family is forever grateful to The Dravet Syndrome Foundation... they have given us our freedom back :)
Review from Guidestar
The Dravet Syndrome Foundation has been truely AMAZING to us. Our 4 yr old son Miles was awarded both a cooling vest and an IPad by the foundation. These are life changing expgifts that we would not have been able to obtain had it not been for THe Drravet Syndrome Foundation. On good days when Miles can go outside his cooling vest helps to keep his tempture regulated so that he can play for more that 5 mins at a time. On the bad days when he cannot go outside the IPad provides education and entertainment. Miles has SEVERE visual sensitivities to lights/patterns which make travel, doctors appointments, haircuts, shopping etc...extremley difficult. The IPad has given him something to focus on so that we can avoid additional visual and sensory triggered seizures. Slowly we are gaining some control in our life. We are eternally greatful for the help the DSF had provided. Thank you! Thank you! Thank you!!!
My daughter Anna (8 yrs) was diagnosed with Dravet Syndrome at 10 months of age. Anna is significantly delayed globally with daily seizures. We enjoy being outdoors and are an extremely busy family.
Traveling with Anna with her personal belongings as well as her medical equipment
have made it difficult at times, leaving us with the feeling that just staying home is easier and less stressful.
We have been granted the gift of an adaptive stroller for Anna through the Dravet Foundation.
I cannot tell you how grateful we our for this gift of freedom for Anna. To be able to pack her up with her belongings knowing she will be comfortable and safe should she have a seizure is so comforting.
This foundation has helped so many families and brings happiness when we need it the most!
Review from Guidestar
When my daughter was diagnosed with Dravet Syndrome, DSF founder, Lori O'Driscoll, showed me that there was still hope. DSF has been devoted to raising funds for research that will help lead not only to better treatments but, someday, to a cure for Dravet Syndrome and related epilepsies. DSF is incredibly responsible about how it spends its funds, and never takes its eye off of the needs of its community. I am so proud to be a part of this wonderful organization.
I am so proud to be on the DSF board of directors. When my daughter was first diagnosed with Dravet Syndrome, we were told by the geneticist that we should find other Dravet parents to band together, raise money and locate a doctor willing to do early stage research into a promising avenue of gene therapy. This task seemed monumental, but two weeks later I met two members of the DSF board and learned that, in less than two years since they formed the DSF, they had already accomplished this, and the research was underway! Since then, I have become more and more involved, and have learned that the DSF founders are not only hard-working, dedicated moms, they are also well-organized businesswomen who make sure that virtually 100% of every dollar raised goes to the most promising avenues of research, or to provide assistive devices and services to Dravet children who otherwise would be unable to afford these life-changing tools. It makes me feel so good to know that we are making the lives of these children and their families a little bit better, and that someday, the research we fund may lead to a cure for my daughter and all of the other children and adults suffering from this catastrophic condition.
I am a grandmother of a child with Dravet Syndrome and have worked with the Dravet Syndrome Foundation from the time her diagnosis was made 3 years ago. We live near the foundation headquarters, (tho their concern and reach are world-wide), so it has been fairly simple to volunteer in the many fund-raising events and activities. The young women who founded and run the organization serve as true inspirations for us all: their energy, intelligence, ingenuity, and commitment to their cause seem endless. They work so hard to raise funds to support research for a cure, as well as treatment options and improvements, for those suffering from Dravet Syndrome, whether or not the specific research will benefit their particular child. Despite all of their efforts, The Dravet Syndrome Foundation, Inc. is in desperate need of additional monies to fund some very promising new research. And, due to the nature of this de novo mutation and the proposed research, the findings would benefit other, more pervasive conditions as well. I will continue to join in the efforts to raise these funds and hope others of you will support us.
I am a grandparent of a child with Dravet Syndrome. We live in Connecticut so it seemed logical, following this devastating diagnosis, to become involved with an organization based here. But the impact of the Dravet Syndrome Foundation is more than local: Its support of patients and their families, information gathering, and funding of crucial research reaches literally around the world. My experience working with the women who founded the organization, the men & women who serve as volunteers and the professional advisers has been amazing. I have rarely encountered a more professional, intelligent, caring, creative, energetic group of people. These are people who are doing everything humanly possible to enhance the quality of life for those with, and to find a cure for, Dravet Syndrome. I am truly proud to work with them as a volunteer.
The Dravet Foundation is an invaluable resource for my family. My son was diagnosed in November 2012 with Dravet Syndrome. The foundation has provided us with information on getting insurance coverage for my son's medications. They helped us get in touch with a doctor who specializes in Dravet Syndrome. Most importantly, they have provided support to us as we learn to cope with our son's diagnosis.