Dravet Syndrome Foundation, Inc. provides a vital service providing education and support to families.
The Dravet Syndrome Foundation has been our lifeline. Their website is very informative, they have weekly zoom calls with experts discussing matters relating to all things Dravet, and the directors are very quick to get back you if there are ever any questions or needs. This organization is full of experts, doctors, parents, and family that are willing to do whatever it takes to help find a cure for this awful disease. They are constantly trying to raise money for research for a CURE. These parents who lead the organization have been my inspiration to be able to carry forward during the dark times Dravet sends. They have far exceeded any expectation I had when I decided to volunteer for this nonprofit and really get involved.
Both of my now adult children have the SCN1a gene variant and my son is on the Dravet end of the spectrum. I honestly don't think my kids would have made it to 26 and almost 23. The resources shared by this group are tremendously helpful, and I have never seen another organization with such a high percentage of funds raised going to research. We so need a cure in my children's lifetime, and because of this group, we are hopeful. I have known some of these families for over 15 years, and it is so reassuring to see these children grow up. Thank you, Dravet Syndrome Foundation!!
The dravet foundation has spread awareness, provided research, new treatments, and funding to many families. Families like ours and many others have benefited from the hard work of this foundation!
Finding this foundation saved me from a dark place... My daughter was diagnosed with Dravet Syndrome at 3 months and my world shattered. I had never heard of the condition, was afraid of the unknown, but through this foundation I gained knowledge and understanding. Through their social media I have gathered support from other parents and I don’t feel alone. Not only did they save me mentally but I was able to receive a monitor to watch for seizure activity while my baby is sleeping which has helped us to find peace of mind. They also assisted our family in getting a generator for hurricane season so we won’t have to worry about medications spoiling or intense heat temperatures that would spike more seizures in me baby girl. I can never thank this organization enough, but I will always try my best to share and seek donations to give back to them and so that can continue their amazing mission helping others in need
DSF is doing the most imperative work out there to help the children and families impacted by Dravet Syndrome. So grateful for their dedication to finding a cure. Everyone involved is lovely and courageous and kind.
They are the most wonderful educated people I know . They have helped families understand and cope with this disease .
They have made it easy for help of medical equipment and other things our children need.
They set up online information videos and have even gotten doctors to help us understand more about our children’s needs .
The kindest people and most involved people I have had the pleasure of knowing .
Dravet Syndrome Foundation has quite literally changed our lives. From the online support group where we can connect with other parents, to conferences where we can meet in person to learn more about this syndrome, the resources they have provided to us are invaluable. Even during a pandemic they have managed to keep us feeling connected by hosting online coffee chats and educational webinars. We are so thankful for the efforts brought forth by the entire DSF staff and board. They exemplify what every rare disease nonprofit should aspire to be.
Our Family is beyond grateful for Dravet Syndrome Foundation! Our son was diagnosed shortly after his second birthday (he's now 6 years old). We connected with DSF for support and resources. The opportunities for education they provide through the biennial professional conferences, the annual regional workshops, and ongoing online webinars is so valuable. We appreciate the emotional support through the Caregiver Support groups. Since our son's diagnosis, we've seen DSF continue to grow and provide even more resources and opportunities for families- whether those families are newly diagnosed or are families with an adult with Dravet Syndrome. We value their commitment to providing money towards more research in Dravet Syndrome and we are proud fundraiser participants!
We love DSF! They helped us to navigate our son’s rare diagnosis in the early days and continue to do so. They are our #1 news source for updates on our son’s condition and we are so thankful to them.
Words cannot express our thanks and gratitude to the Dravet Syndrome Foundation (DSF). After our son Ethan's diagnosis, we we're absolutely devastated and didn't know how to move forward or what to do to help our son. Reaching out to DSF made a real difference on how we have coped with Ethan's diagnosis. DSF's exemplary dedication to helping families is truly remarkable. In addition to receiving incredibly valuable information and advice, we were also awarded a grant to help us purchase equipment and supplies that would be beneficial for Ethan. Emotionally too, DSF has provided a great deal of comfort by connecting us to other families affected by Dravet.
Thank you again so much for the incredible support you give that helps us to keep going and remain hopeful!
Their webinars were and are extremely helpful. You never feel alone.
My son’s school nurse got great help in setting up a safe school environment for my son after contacting the DSF and raved about them.
I feel very blessed that we have such a supportive foundation as Dravet Syndrome is such a life changing diagnosis.
My son has Dravet Syndrome. My husband and I were the grateful recipients of a travel scholarship to attend the Biennial Dravet Conference. We were able to attend the conference for much less this way and learn valuable information we would have otherwise missed. We appreciate all the work DSF does to bring knowledge and awareness to the community for those living with this type of epilepsy.
When our wheelchair lift vehicle broke down they fixed it, despite us living in Australia and the charity being in America. They made a huge difference to the quality of life for our children with dravet syndrome
My Daughter Elsie has Dravet Syndrome, some of the struggles that she faces on a daily basis are difficulties with learning, wondering off, seizures, and behavioral issues. We applied for an IPad through the DSF and since she has received it some of these struggles have improved. She can use it for a variety of learning opportunities and to also play the music that she loves. The IPad helps her to stay focused and she loves that she is in control of the device.
The grant we received from the Dravet Syndrome Foundation literally changed our lives. My son was diagnosed with Dravet in November 2012. Since that time, my wife and I rotated sleeping with him every night due to the fear of him having a nocturnal seizure that we would not detect. With the grant, we were able to purchase a SAMi seizure monitor that alerts us to nighttime seizures. Our son can now sleep by himself and we are able to rest well knowing that we will be alerted to any seizures. We are now somewhat a "normal" family!
The Dravet Syndrome Foundation (DSF) has helped me and my son and many others like us in so many ways. In 2019 we were fortunate to receive a Patient Assistance Grant (PAG) that allowed by son, Brian, to get an iPAD that will help him with reading, math, & logic skills and in so many other ways. He LOVES his iPAD and has learned to navigate the educational games on it by himself. In addition to the PAG, the DSF provides support to our community, education to the DS community, as well as to medical professionals, and funds research into understanding DS and finding a cure for DS. The DSF has helped to get FDA approval of new drugs for DS. Just this week, the executive director wrote a letter for me to use in my third stage Medicare appeal before an Administrative Law Judge, in order for me to try to get Medicare to cover the cost of DIACOMIT, a recently FDA approved drug for DS. The drug is so new to the USA, that it is not yet on the Medicare formulary. I don't know what I would do without the DSF. It's a wonderful organization.
The Dravet syndrome foundation not only gives us parents a sense of hope, they remind us everyday that we are not alone and encourage us everyday to keep fighting the fight!
The Dravet Syndrome Foundation is a great place for those of us who have children that are diagnosed with Dravet. They help us get the equipment we need for our kids! A lot of times insurance won’t pay for the expensive equipment our kids need. We have been blessed by this foundation!
Our daughter Emalyne had her first seizure when she was 3 months old. After months and months of wondering we finally received her diagnosis of Dravet syndrome right before her first birthday. This organization is amazing. They are doing research and they offer hope, help, and guidance in all aspects of our little girls life, and the many lives of other children effected by this syndrome. Thank You for all you do! Jeffery & Michele Wolfe
Review from Guidestar
Daunte is my 10 year old son with dravet syndrome and has trouble with a lot of things some people take for granted such as temperature regulation, communication, danger awareness, and many other things associated with dravet syndrome. Just a year ago we were forced to try to keep him in the house in the ac because any extreme temperature change sends him into violent seizures, he also has very little to no speech and can't tell us if something is hurting, or if he needs something and will attempt to try to get to things that are sometimes in dangerous places. Through the generosity of the Dravet Syndrome Foundation grants we were able to get him a cooling vest and an Ipad. It's truly been a blessing. He is now able to go out and enjoy the yard and get to appointments and enjoy being outside with his siblings without having violent seizures. He is able to use a communication app on his Ipad to let us know if he is hurt or needs/wants something. It also helps the doctors and therapists when he starts getting overstimulated or anxious during tests and procedures. His speech is also emerging and improving tremendously. We are so grateful for the Dravet Syndrome Foundation and all they do for our family.
DSF has helped our family over the last 7 years by providing my son with items not covered by insurance that we were unable to purchase on our own. These items like his cooling vest allows him to participate in many activities that he would not have been able to do before.
The Dravet Syndrome Foundation has played a critical part in or journey. DSF provides support and connects families in many ways. Communication is key when you have a medically fragile child. We have been a part of many DSF fundraising events and attended medical conferences. DSF is always a place we can rely on for key information and hear about new options for treatments that are being funded by the foundation. Our family appreciates the many questions DSF has answered for us and their continued efforts to improve the quality of life for our kids. Thanks DSF!
This is our princess Jana. Our fighter, brave and fearless. First seizure at 4 months. Diagnosed with Dravet syndrome at 10 months. Life changes in a moment when you get that terrible news. She is 8 now and still fighting.
Our neurologist Dr. Linda Laux told us about this grant with Dravet Syndrome Foundation. It is the first time we applied and we were so pleasantly surprised with Dravet Foundation efficiency and generosity! We are so grateful to be recipients of cooling vest and iPad that we can use for speech therapy! Thank you Jamie Cohen and Mary Anne Meskis and all the Dravet moms who are finding some extra time to volunteer and trying to make our lives a little easier. With you there is still hope.
Thank you again for doing this wonderful things!
This is Allie. She and her little brother are my entire world. Unfortunately a large part of our world includes Dravet Syndrome, a rare form of epilepsy I had never heard of until Allie’s diagnosis. Thank god for the Dravet Syndrome Foundation. It was the one place we could turn to for information and support when we were first diagnosed with this terrifying and heartbreaking disease. In addition to having uncontrolled seizures, Allie also has many developmental delays and has to attend many therapies every week. As a result, I had to quit working to take care of her many special needs. We decided it would be best to have Allie on as few pharmaceuticals as possible, and so we supplement with the ketogenic diet and cannabis oil, both of which are not covered by insurance. Living on a single income has been very tough, especially with the cost of Allie’s healthcare. DSF has helped allieviate some of this strain through their Patient Assistance Grant. We are so grateful to be recipients of a pulse oximeter and seizure monitor, both of which we would not have been able to afford on a single income. Additionally this year, we will be awarded an iPad for us to help aid in Allie’s communicative and cognitive skills. DSF has been an invaluable source of information, support, and hope for us. In addition to the patient grants, they are also funding important research to help find a cure for this devastating disease. Words will never be able to express our gratitude for DSF, nor how absolutely important DSF is to families like mine.
Grace was diagnosed with Dravet Syndrome at 14 months old and because of her prolonged seizures endures physical, speech and occupational therapies along with more Dr appointments than I care to mention. The Dravet Foundation has been there for our family from the start and we are so happy to help spread the word about the wonderful things they do for families like ours! Recently they've just granted Grace a new iPad that we can use for speech therapy and with so many expenses that come along with this diagnosis, it helps so much. The Dravet Foundation is full of caring people that want the best for our children and I am so happy they are a part of our lives.
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!
as a parent of a Dravet child with limited resource and an incredible amount of "needs". My son was fortunate to benefit from a patient assistance grant to recieve a jogging stroller. The process was easy and I sincerely appreciate the efforts of this foundation!
Review from Guidestar
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.
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 a 16 yr old son with Dravet Syndrome who was blessed to receive an IPad2 through the DSF Patient Assistance Grant Program. In the past I have seen DSF offer other medically necessary items like cooling vests through the same program. I think it is incredible that such an organization is devoted to not only raising money for research, but also provinding support to the families. Thank you DSF for all the wonderful things you do!
Review from Guidestar
Our daughter Isabella Grace Wilson was diagnosed with Dravet syndrome at the age of three. Due to prolonged seizures Isabella lost over 50% of her brain causing major delays in all areas. At school her Occupational Therapist worked with Isabella with an Ipad. She demonstrated for us, our daughter’s ability to learn and communicate using one. Isabella’s teacher and OT encouraged us to try to purchase an Ipad for home. We are very thankful for the Dravet Syndrome Foundation, as Isabella was a beneficiary of an IPad2, and she uses it daily at both school and home. DSF is an excellent foundation that has provided helpful and caring information on the disease of Dravet Syndrome and has provided invaluable tools for those who are in need. Thank you DSF!
My daughter, Amanda, was the recipient of an iPad2 from the special session offered by the DSF Patient Assistance Grant Program. The process for applying for the grant through the Patient Assistance Grant Program was a very user friendly and efficient. Amanda began having seizures at 4 months of age and at age 10 was diagnosed with Dravet Syndrome. Amanda has been using an iPad at school and has shown an increase in classroom participation and communication. We are very excited to have to opportunity to utilize the iPad to continue to increase her skills and make it easier for her to be consistent with her skills across environments, which she struggles with. DSF has and continues to be a great source for information and assistance by providing resources, research and increasing awareness of Dravet Syndrome and related epilepsies. Thank You!!
My son Xavier was picked to receive an iPad. It has been such a blessing. He is happier and learns better with it! With the financial hardship of being a single parent/caregiver I would have never been able to provide it for him. So thank you DSF for making the impossible possible. We appreciate you and everyone who contributes to the organization! Happy 13th bday Xavier!
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.
the dravet syndrome foundation has helped so much with our family. Our daughter daignosed at age 1.5 with dravet syndrome. we were a mess and had no where to turn. We found this foundation and felt we had a family and support that we could never imagine. In most cases people feel that have to go thru things alone and when we found this foundation we were no longer alone. they helped up with sings symptoms and other support to help us find a way to deal with this horrible disease that destroys our kids. We started to show our support back with doing a walk and getting our community involved in this foundation to find a cure. We pray that some day the will find a cure for our kids.
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!
Dravet Syndrome Foundation is an amazing organization dedicated to raising funds for research into Dravet syndrome and related conditions. Not only do I serve as the secretary, but I am the mother of a 7 year old girl who has a "dravet-like" epilepsy. The support and understanding gleaned from the community surrounding DSF is simply amazing. My family continues to support and volunteer for DSF because we know they provide such a concrete plan to find answers for the afflicted individuals and families. I am honored to serve with the working board and director, as we are all moms putting our passions, talents and desires to make a difference to good use. DSF is just incredible!!
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 mother of a 3 year old little girl that has Dravet. In her three years of life we have experienced many lows and some highs. I came across the Dravet Syndrome Foundation, which was for in depth in the amount of information supplied. I was able to connect with other parents that understood what I was experiencing and read other stories of similar kids. I came across an application for grant that Dravet Syndrome Foundation had and decided to apply for our daughter because she lacks verbal communication. I was recently contacted by one of the director and I was informed that they would be providing our daughter with an Ipad. That was not the biggest surprise of all. I was able to speak with the directors son who also has Dravet and following that conversation with him I felt very hopeful of the possible future for our daughter. I am very grateful for the Dravet Syndrome Foundation and all of the assistance they have provided to us.
Review from Guidestar
Hello Everyone, I am on top of the world today because I just received notice that my adorable 7 year old son Matthew is receiving an IPad from the Dravet Syndrom Foundation. I requested an IPad a while back when the Dravet Syndrome Foundation received a donation. The IPad's went so quickly but I was told that I would be placed on a list in case more donations were available. I am so happy that they came through in flying colors. This device will change the quality of life for Matthew and our family. We will be able to go out to restaurants, homes of friends, special events and places that would usually cause him to get extremely restless after a short time. What a great organization that does such heartfelt work for children and families of Dravet Syndrome. Thank you .... Matthew's Mom :~)
Review from Guidestar
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.
My name is Karen Walters and my son Zane has benefited from the Dravet Syndrome foundation because, they have answered questions as to where I can go to gather information about this syndrome and various websites where I can chat with families too share my experience. Zane began having seizures at 4 months old, now he is 2 yrs old and I am trying the Ketogenic Diet. The diet as decreased his seizures and he is doing a lot better. The Dravet Syndrome Foundation is so wonderful they have given Zane a wonderful I pad to a assist in his learning and a Cooling Vest to maintain his body temperature. Thank you
My daughter Grace was diagnosed with Dravet Syndrome in January of 2009. She has been living with this rare syndrome for almost six years now! If it wasn't for learning about Dravet Syndrome Foundation and all that they do, I would be in a much worse situation! DSF gives my husband and I so much hope through the on going research that is being done we believe that one day there will be a cure! We are so very grateful to everyone involved in keeping the foundation going and are so very touched that our daughter was recently awarded an ipad2 to help reinforce her academic skills! Thank you to the DSF for all that they do but most importantly for continuing the research and support for all Dravet Syndrome families!
My son has Dravet Syndrome & I cannot say enough about this foundation. DSF has accomplished so much in the few years since it's establishment. They have helped create research grants & projects in such short time it blows my mind. Dravet Syndrome is devastating disease without much hope or understanding when you 1st get a diagnosis then you find a dedicated group like this & they show you yes if you work hard & fight you can make a difference.
The DSF is a wonderful foundation. It has truley changed so many lives. My son Carter suffers from Dravet Syndrome and we were fortunate enough to recieve an Adaptive Stroller and Seizure Alarm for him through the DSF Grant program. I truley dont know where I would be without the support they offer!
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.
My role with the Dravet Syndrome is multifacted, and because of this I have had the opportunity to see every aspect of the organization.
I am a board member, donor, and a parent of a Dravet child. I utimately would like to volunteer more.
The DSF is a powerhouse organization in the realm of fundraising. We observed this fact at Ciara's Butterfly Bash on March 26, 2011. All the proceeds go to research toward a cure.
Lori O'Driscoll, one of the founders of the DSF, came down to our son Liam's first Special Education meeting, and explained what Dravet Syndrome is, and how the syndrome effects every aspect of daily life.The response was heartfelt, and as a result, Liam has had a very sucessful year.
Lori also got us the best medical care for Liam, and we are grateful .
The DSF is an organization that is highly effective. Lori O'Driscoll, Amanda Renz, and Mary Anne Meskis are motivated to educate, raise funds, and support families that have to deal with the devastating effects of this catastrohic form of epilepsy.
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
I am a parent of a child with Dravet Syndrome. Words cannot express my gratitude for what the DSF is doing. Most inspiring is that it is run by parents within the Dravet community. Thank you, DSF, for all you have done and continue to do!!!
The Dravet Syndrome Foundation was formed by parents who wanted to see aggressive research being done in the field of Dravet syndrome that would impact their loved ones and other afflicted with this disease. Although science might not move as quickly as we as parents would like, we want to assure that lack of funding is not what is slowing it down.
We have awarded more grants for research specific to Dravet syndrome and related epilepsies in the U.S. than any other non-profit organization. In less than 2 years since our inception, we have awarded over $625,000 in research grants. We are a volunteer-led organization with no paid employees and little overhead. We pride ourselves on maintaining operating expenses at a minimum to ensure that the gift of every donor truly brings us one step closer to a cure.
We focus our efforts in 4 areas, per our mission: Research Grants, International Ion Channel Epilepsy Patient Registry, International Patient Assistance Grants, and our Annual Research Roundtable for professionals with an interest in Dravet syndrome and related epilepsies.
Review from Guidestar