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.
My 8 year old son Bryant Weasel was recently awarded an IPAD 2 from the Dravet Syndrome Foundation. Bryant suffers from Dravet Syndrome and began having seizures when he was 3 months old. At the age of 18 months Bryant experienced a status seizure that lasted 2 hours and 45 minutes. After that seizure Bryant lost his ability to speak, walk and began to show intellectual delays. At this time Bryant continues to be delayed globally. Although his receptive speech is almost on target his expressive language is that of a 2 yr old. The IPAD that was funded by the DSF will be used as an Augumentive Communication Device utilzing the PROLOQU App. He has been using the device at school and his IEP team recommended one for home use. Our private insurance denied this request. We are truly excited to be given the opportunity of getting such a fantastic device and are delighted to watch as Bryant will now be able to express his wants and needs. Thank you so much!! This organization is TRULY AMAZING!!!! :)
Review from Guidestar
I have been raising a child with Dravet syndrome for the past 8 years. In my quest to find other parents like myself, I had the pleasure of meeting and becoming close friends with two of the people who ultimately started the Dravet Syndrome Foundation. I have volunteered for the foundation whenever I could since its inception because I believe in what they are trying to accomplish. It was very exciting to know that there was now an organization that was setting out to do research for our children. Dravet syndrome is a catastrophic disease that ultimately changes every aspect of the afflicted child as well as their families' lives. The Dravet Syndrome Foundation has not only set out to do research in hopes of finding a treatment, or a cure, to help us, but they also provide assistance for families in need of medical equipment or other devices that can help make their lives just a little bit easier. In my case, my son has severe OCD as a symptom and cannot be left by himself unsupervised at any time. This made it very difficult to get anything done around my home, such as clean, cook, or help my other son with his homework. The Dravet Syndrome Foundation provided me with closed circuit cameras for my house and I cannot put into words the difference this made in my life. Now I can function around my home without compromising my son's safety. What the Dravet Syndrome Foundation has accomplished in such a short time definitely speaks for the hard work and dedication of its Board of Directors. If a treatment is to be found for this horrific disease, I have no doubt the Dravet Syndrome Foundation will be involved somehow.
As a volunteer with the DSF, I am very inspired by the people who run this organization. The leadership is so fantastically devoted and tireless in working to achieve their goals. As a relative of a child with Dravet, I am so grateful the organization that this organization exists to help.
I have been very active in the world of Dravet Syndrome for 6 years, working on committees and with various professionals. Two years ago, I wanted to step back as I felt that I had done "my bit" and wanted to spend more time with my family. However, I was so impressed by the drive, commitment and professionalism of the DSF, that I felt I just had to join them to support them. I had already worked with one of the co-founders of the DSF, in another organisation, and knew that she would take the organisation forward to achieve great things for Dravet families and research towards a cure. The DSF was also the only organisation committed to funding research for a cure. For me, that was (and still is) the most important objective.
As a volunteer, especially already with huge stresses of everyday life, including having a child with Dravet Syndrome, it is so important to have faith in the organisation, to see efficient use of all of the resources and, perhaps most importantly, to see tangible results of your volunteer efforts. I have taken great pride in representing the DSF in various meetings with doctors. It is hugely satisfying to work together and to see ideas turn into concrete plans, which have then gone on to achieve results, such as the annual DSF research Roundtable, in which researchers and doctors share information and collaborate.
The DSF continues to achieve amazing things. It supports families AND the researchers who are working so hard to find a cure. These researchers constantly need money but also encouragement, to keep them working and motivated, both of which the DSF provides, very successfully. Its professionalism and integrity continually attracts more and more supporters, from the people who fund raise, to researchers, to the clinicians who manage our childrens medical needs. Still more is needed, to get us to THE cure for this catastrophic disease.
The Dravet Syndrome Foundation is truly a great organization. As a parent of a child with Dravet Syndrome, it is so reassuring to know that there is a group of people that are working so hard to raise money to support families and most importantly to fund valuable research projects. There are so many rare disorders out there that aren't getting any attention or dollars, but to think that our cause has such strong support is just amazing! I have been so impressed with the leaders of the DSF by their professionalism, integrity and pure passion for the mission to find a cure for our children. For the past two years, our family has been privileged to work with some other families to do a fundraising walk for the DSF. The process is so organized and they make it both easy and fun to raise money to go towards research. I cannot say enough good things about the DSF!
My son was diagnosed with Dravet Syndrome back in 2002, with genetic verification in 2003. Sadly, my son is one of the Dravet Angels, and passed away from Sudden Unexplained Death in Epilepsy (SUDEP) back in June of 2008. He was 8 years old when he passed away. While SUDEP was my son's primary cause of death, Dravet Syndrome is listed on his death certificate as his secondary cause of death. Over the years, I have had the privilege of knowing the co-founders of the Dravet Syndrome Foundation (DSF) personally before they started the DSF, and after my son passed, I wanted to give back to the DSF by volunteering at their annual fundraiser. The DSF raises much needed research funds, as well as monies allocated for cooling vests, seizure dogs, iPads, and other items needed by Dravet Syndrome families in need. I look forward to volunteering at DSF events for years to come!
Our daughter Alexis was diagnosed with Dravet Syndrome in 2006. Until the Dravet Syndrome Foundation was formed there was no organization funding and directing research. The parents that formed DSF changed our lives. They gave us hope and a new purpose. We could continue to feel hopeless, or we could join their mission and help to change the future for our children. We have been fundraising for DSF for the past 3 years and it has brought so much optimism to our lives. We have great hope for Alexis, and all those that suffer with Dravet Syndrome. They have helped us feel part of a community that supports and cares for each other. The accomplishments of DSF are truely staggering. They have made enormous strides in funding and shaping the research, in increasing awareness, providing a support network for families and caregivers, and by supporting families in need with financial assistance. Hope gives us the strength to continue fighting this devastating seizure disorder.
I have a 4 year old son, who was diagnosed with Dravet Syndrome when he was 13 months old. We where put in contact with the Dravet Syndrome Foundation and they have been an amazing part of a rough journey. The DSF has provided information when we had no idea where to start and support and encouragement when we so desperately needed it. We have received grants for a cooling vest and a seizure response dog for our son from the Dravet Syndrome Foundation. I appreciate all that they do so much, that i wanted to find a way to help. I volunteer once a year to help raise funds and awareness through the DSF by hosting a walk. Even as a volunteer, the support and encouragement is amazing. I would not be able to do it without their help.
We received a grant from the Dravet Syndrome Foundation to purchase a seizure response dog for our son. The grant was offered within a few weeks and the check arrived to the organization with the seizure response dog within a few days. It was a very easy and uncomplicated process. Thank you so much!
Review from Guidestar
My husband and I have been a part of Dravet Syndrome Foundation since the beginning stages of growth. We are beyond impressed with their strong leadership, passion and hard-working board members. DSF has worked hard in raising awareness and funds for our children “in hoping” to find a cure or even comfort in their lives. Our son was rewarded a stroller a few years ago, to receive such an amazing gift for our son was incredible. The board members never stop working and always go beyond to reach out to each family in need and even new families who are just finding out about the Dravet Syndrome world. DSF has an honest approach about what Dravet Syndrome is and always try to find a way to help families through their daily struggles. My husband and I are very proud to be an apart of such an amazing organization.
I am a volunteer for the Dravet Syndrome Foundation. Since the first time I read their website I wanted to volunteer. First because I was very impressed with how hard they work raising money for research. That gives us as parents with a child with Dravet Syndrome, hope that our kids will have better treatments. I am very impressed with how while raising the funds they also work very hard to support and help the Dravet comunity in a way only family would do it. They also help families by providing assistive devices and services to children who otherwise wouldn't be able to afford. I felt very welcomed since my first e-mail contact with them. I am very proud to be a volunteer and I wished I had more time to be more involved with such a great Organization, very professionally ran and that makes sure that the funds go to the most promising research projects that one day may find a cure to this devastating disease.
My son was diagnosed at 6months with Dravet. II went online and found the foundations website! As a rare syndrome while my son was having a prolonged seizure I was just reading which medications not to administer from the Dsf website. I was desperate and Lori., the president called me back after I sent her an email, she gave me hope with her words and the warning of this horrible syndrome! the foundation has been like a family through their support group. They share my hopes, laughter and cries! The staff is working hard on research and just pray one day there is a cute for this. DSF has just granted my son with a cooling vest and an IPad we use during his therapy. I am extremely grateful to the foundation and staff for working hard on research and although they face the same problems all dravet parents do, they make theirselves available to lend a crying shoulder and give support! I will always be thankful to DSF for all the work they do and trying so hard on finding a cure,
I am a volunteer for the Dravet Syndrome Foundation. I am so impressed with the way this organization is run, and with their Board and staff. They give all of their time to help find a cure for this rare disease. I am happy to be a part of it in any way.
The Dravet Syndrome Foundation has been incredibly valuable for my family. It has afforded my husband and me hope for our son in the face of this devastating syndrome by funding research, and providing us with a social support system of other parents of Dravet kids. Because Dravet Syndrome is rare, ongoing research for treatments and cures requires that the DSF be able to continue it's amazing work raising funds and educating caregivers, the medical community, and the public about Dravet Syndrome. It has also raised money for patient assistance grants for those unable to afford certain pieces of equipment necessary for living a safer and more fulfilling life.
This organization has done so much to get funds for research, their fundraiser get better every year and more and more people are educated ,thru the fundraiser, on how devastating this syndrome is. We must every day work towards finding a cure and support the families, not in monetary means but most of all with the hope that one day there will be a cure