DSF has been instrumental both educating us in the care of our child as well as helping as a community to keep our family's mental health up. The amount of research they support is amazing and has even led to new treatments specifically for Dravet Syndrome. We'd be lost lost without them.
When our son was diagnosed with Dravet Syndrome, we did not know where to turn. Through the Dravet Syndrome Foundation, we have found support in our journey and a community. We have attended conferences hosted by the DSF and have found incredible resources that have greatly changed our sons quality of life. And more importantly, through the research and advocacy that the Dravet Syndrome Foundation provides, our son has been on a medication that has greatly improved his seizure control. Without the advocacy and support of this organization, many of the advances in the medications and clinical trials would not be possible and without them, we would not have hope.
The Dravet Syndrome Foundation means everything to me and my family! Through all their support, resources and advocacy I have never felt alone or lost in this journey!
The DSF is an awesome nonprofit that provides support for families and promotes fundraising for research for a cure.
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The Dravet SYNDROME FOUNDATION has been a godsend to me and my son. Because of their efforts, three of the medicines that Brian takes have been approved by the FDA and made available here in the USA. His seizures are well-controlled. I have received so much support from the DSF through the on-line parent support groups, and the events that they sponsor. My son and I have both been recipients of patient support assistance grants. I don't know what families of those with Dravet Syndrome would do without this wonderful organization
My daughter was undiagnosed with Dravet until she was 14. The resources and support provided to families cannot be found else were. The research funds provided a medication that has my daughter from 270 seizure days to 34. I cannot thank them enough for their support.
As a career nonprofit professional, it’s been a true pleasure to find and work with a team of people as mission-driven and genuine as Dravet Syndrome Foundation / Team DSF! I’m continually impressed by how dedicated and cohesive the team is in serving the community. As members of the community, themselves, staff members are intrinsically motivated to work hard and serve. Their focus is singular—advancing the mission. When you donate to DSF, rest assured your contributions are not going to personal gain, but directly toward research and progress."
The Dravet Syndrome Foundation means so much to my family. When our daughter was first diagnosed I didn’t know where to turn and a fellow Dravet mom referred me to the DSF. This year we were able to attend our first conference and it was so amazing to be able to connect with others who are going through the same things that we are.
DSF is simply amazing! We never would have survived diagnosis and this crazy life without the connections and support they offer!
The Dravet Syndrome Foundation helped save us. Two new parents to a then 5 month (now 3) old seizing uncontrollably, in and out of the hospital, a million questions, lost and scared, until we received the Dravet Syndrome Diagnosis and found this community. This foundation, these people, give us hope, community, a shoulder to cry on. They are a safe place. We could not be any more thankful.
The Murray Family
Dravet syndrome has been a lifeline to my daughter during her battle with Dravet Syndrome. They have helped guide us to the best specialist, provided mental and emotional support and also assisted us with purchasing seizure alert items that our insurance wouldn’t cover. I am forever grateful and thankful
I first reached out to the Foundation in search of information on how to source prescribed medication which was not available in my home country. The response was prompt and I was able to get the information I required.
Recently I sent an application for the patient assistance grant. Again they responded promptly. The whole process was very swift and they were in constant communication with me until I received my consignment. It's great to know that someone understands you and has your back in this journey.
We have been fighting with our insurance for almost 2 years to get my daughter an AAC device to help her communicate with us since she has limited verbal capabilities. We reached out to the Dravet Foundation for help and with the Patient Assistance Grant they were able to provide my daughter with a device and accessories to keep it safe. Thanks the Dravet Foundation they have opened up new way for our daughter to communicate with us within days of applying for the grant! We are so appreciative of the help we got and cannot wait to see what doors this opens up for our daughter.
The Dravet Foundation was beyond a lifesaver for our family. Our son has been battling Dravet Syndrome and triggers to his seizures were adding up as fast and frequent as his seizures were happening. With the help and support of the Dravet Foundation we were able to find other families and share in our and their stories to become more knowledgable. We were able to be bleesed with resources to help improve and decrease our sons epilepsy. The Foundation has opened our eyes to so much knowledge, research, and resources. What a blessing this foundation is for us and other Dravet Warriors.
We applied for a Patient Assistance Grant for a Wonderfold Wagon to help transport our daughter with Dravet Syndrome. The process was amazingly quick and everyone involved was so helpful and kind! We are so thankful for this amazing support to help us navigate the world and keep our daughter safe and comfortable!
We have benefitted greatly from the patient assistance grant . Recently, our four year old was prescribed orthotics and in Canada we do not have a coverage for this. The foundation also covered the cost of a much needed cooling vest to help Alina in those warm summer days . This organization has helped us out the most. We have peace of mind at night because of seizure detection equipment that was granted for us as well. Thank you so much for supporting kids like Alina. It truly impacts her life in a great way and improves her quality of life.
Amazing foundation which works to make the lives of those living with Dravet and their families, easier and better!
The Dravet Syndrome Foundation is an amazing non profit. They’re extremely supportive and caring to all Dravet and SCN1A families. My son has the SCN1A gene which causes him to have random, and unprovoked seizures. I was blessed enough to apply for the Patient Assistance grant through the Dravet Syndrome foundation for a seizure detection watch and camera for when he has them at nights. The process of approval and receiving the products was very fast and easy, a volunteer even followed up to ask how the products were working for him. Im so grateful for organizations such as this one who’s number one priority is to advocate, teach, and support!
Grace Williams is a 2 year old toddler from Jamaica who was taken here last year August to conduct genetic testing to assertain the cause of her having multiple seizures per day despite being on 4 medications. Grace was born on June 10th 2021. She has three older siblings who are in Jamaica with her Dad. She started having seizures as early as 3 weeks old after having febrile fever. She has been admitted in the hospital multiple times for uncontrolled seizures; as many as 80 or more seizures per day even on strong doses of medication.
Many tests were done to assertain the issue, however not much was found. Grace has global developmental delay among other issues. She was seizure free for about 2 1/2 months, before she started having multiple seizures again. She was admitted in the hospital here, in late September of 2023, with multiple complications. She spent 4 moths in the hospital because of many complications.
A genetic test was conducted and she was diagnosed with Dravet Syndrome. I became a member and had received a package with many useful items and a lot of information about what approach to take and how to cope as a parent whose child is living with Dravet Syndrome. I didn't felt alone anymore. The hospital team all did a great job to get her at a place where she could go home. Since she wasn't able to get into a rehab because of limited insurance. Grace was in need of specialized care and multiple specialized equipments.
With the limited insurance we had we were in need of some assistance. It was devastated and frustrating. However, after reaching out to the Dravet Syndrome Foundation we received assistance and was able to take Grace home. We are so grateful and thank the foundation for their assistance. Because of the assistance Grace was home recouperating and is doing well. Grace was home for one month but is back in the hospital with many medical complications. Thank you Dravet Foundation we couldn't have done it without you.
We won a giveaway through The Dravet Syndrome Foundation Patient Assistance Program. If we hadn’t it would have taken us forever to save up the money for a SAMi Monitor. Every time we had a little cash saved up a new expense came up and I have been out of work for over a year because our daughter required a full time caregiver.
This foundation has been such a saving grace in hard times. The support is unimaginable. They even gave me a seizure monitor for my daughter.
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We love the Dravet Syndrome Foundation. Our son was diagnosed back in February and we wanted to get the SAMi 3 monitor and they were able to get that for us and it has been a game changer. We are able to actually get some sleep without having to worry we will miss a seizure.
My 2 year old daughter has Dravet Syndrome with status seizures and severe visual sensitivity that makes us unable to leave the house. For 2 years now, we have been seeking help from the DSF for the purchase of vital equipment and things for rehabilitation therapy at home. Thanks to the foundation, we have things that regularly save our daughter's life! From the bottom of my heart, I thank the people who donate funds to the foundation for our children and the staff of the foundation for their cordiality and excellent work. I myself also support the fund through Amazon Smile, so that as many children with Drave syndrome as possible can get things that will make their lives better.
The Dravet Syndrome Foundation has been an incredible, life changing resource. Our everyday quality of life is better because of them. We've received items to help our son through grants (a cooling vest to better control temperature and a pillow he can breathe through at night). We love their workshops and seminars and learn so much from each one. We are SO grateful for them!
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We are so grateful for the Dravet Syndrome Foundation! Our child has a Dravet, a very rare disease, and it's been an incredible source of information for us - what to expect, a network of helpful parents, a yearly seminar/conference with a panel of Dravet expert doctors, and a grant program every March. We were gifted a night seizure monitor through their grant program and use it to watch our son while he sleeps. It's been invaluable. We are so grateful for them!
As a parent with a child that has Dravet Syndrome, the Dravet Syndrome Foundation (DSF), has been an integral part of our family since our diagnosis in winter 2014. DSF adheres to their mission by "aggressively raising money for research," while keeping costs of operations and general cost of the organization very low. They connect families with other families. It's because of them that we don't feel alone in the world of rare disease. DSF is the first place I go to find up to date and current information regarding treatment, research, and news of what's happening in our quest to find a cure. It's also the first place I send anyone looking for more information. DSF is why we have hope for the future.
My family's world was turned upside down by Dravet Syndrome in 2021. It was the amazing network created by the Dravet Syndrome Foundation that helped embrace us and give us the resources we need to find answers, support and the hope we needed to move forward. Their family support group saved our daughter's life on multiple occasions when we were hospitalized and had more questions than answers from our medical team. DSF connected us with leading experts like Dr. Linda Laux who I had the pleasure of meeting in person at the DSF conference this past June. DSF helped our family feel seen and loved by those living a parallel life to our own. I am forever indebted to the care and compassion provided by this organization. Many of the staff members know all too well what this life is like and what Dravet can steal from our precious children with the wrong care and treatment. I am so proud of the major steps they take to work towards research to find better treatments and a cure for this disease. I have been so moved by this organization that myself and a few other fellow Dravet mommas got their new logo tattooed on our body to show our dedication to this cause.
Dravet Syndrome Foundation has changed our lives. From the educational conferences where we can connect with other families like ours, to the online community of support and resources, we truly do not know where we would be without this organization.
DSF has helped our family in countless ways. From resources to education and everything in between, they have always been there for us
Dravet Syndrome Foundation has truly been a lifesaver for our son and our family. We’ve benefited directly from their research, support, and guidance. We were lost when when our son was diagnosed with Dravet Syndrome, if not for the support of the Dravet Syndrome Foundation I’m not sure what we would have done. Thank you, thank you, thank you for all you do!
None of us want to be in "this club". The resources and support that Dravet Syndrome Foundation offers to families helps to make the "membership" a little bit easier. With this support, those in our Dravet community know that no one fights Dravet alone.
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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!
Dravet.org is my home for support, guidance, unique ideas, hope and dreams of how to assist my daughter in her journey.
My son Jacob was born with Dravet's Syndrome and has had 5 different types of seizures through his 15 years. It wasn't until about 3 years ago that he started having them in his sleep and I started to to lose lots of it.I looked into monitors/cameras but saw the price and instead moved him into my bed.I soon learned Dravet Syndrome Foundation gives out grants to families of diagnosed children for things like this and would cover the cost of a new Sami monitor for his bedroom that would alert me if he was having a seizure with no cost to me.The application was easy,Jamie helped me through it and I had a monitor in no time! Having Foundations like this that offer grants for such things helps us parents out tremendously!
When my child was first diagnosed with Dravet Syndrome, we were spending weeks and weeks in the hospital trying to get seizures under control. During those sleepless nights in a hospital room, I turned to the internet to try and find any information about this condition that might help. My searching always led me back to the Dravet Syndrome Foundation. Not only did they offer personal support, but I was able to reach out and connect with other families who had experience dealing with this diagnosis. A few months later- my husband and I attended our first fundraiser for DSF and were amazed- we were seated in a huge ballroom surrounded by other families, supporters, doctors and researchers- all coming together to find a cure for Dravet Syndrome. The science and research that have been funded by the Foundation were the stepping stones we used to guide our decisions about medications and treatments. I was so thankful to have found them early, and 12 years later they are still the first resource I turn to when making decisions.
The Dravet Syndrome Foundation has been our lifeline as we have navigated this journey throughout our daughter’s life. It has been one of the most important supports in our lives. Alexis is seventeen years old now, and through the Foundation’s support groups and conferences we have had access to a network of people who are traveling a similar journey. This has helped us cope emotionally and provided us with access to the latest research and best treatments. DSF’s focus to fund research and find a cure continues to always give us hope. My daughter was diagnosed in 2006, when there was little to no research for this rare seizure disorder. Since 2009, when DSF was founded with a mission to fund research and improve the lives of those living with Dravet, the landscape has completely changed. This is an incredible organization, with a hard working team that is relentless in their pursuit to find a cure.
In addition to being a great resource for information and advocacy, the Dravet Syndrome Foundation has given us the amazing gift of mobility for our son Lucas.
Lucas recently lost the ability to walk on his own due to severe arthritis in his hip due to daily seizures. He loves getting out and exploring, but that has been difficult because we didn’t feel safe navigating uneven terrain with his stroller chair for fear it would break or roll over.
After a couple denials from our insurance for an all terrain wheelchair, we reached out to DSF for help.
They responded almost immediately saying they would be happy to help and before we knew it our new wheel chair had arrived!
Lucas is so excited to be able to get out and explore in a way he hasn’t been able to in the last couple of years. And with a little more practice there will be no stopping him!
Thank you Dravet Syndrome Foundation!
The Dravet Syndrome foundation is an incredible organization! As parents of a child with this condition, we are incredibly grateful for their tireless efforts to promote awareness, fund research, and support our families. This is the one charity that I donate to knowing that my dollars are really making a difference.
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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!
We feel so blessed to be a part of Dravet foundation! We reached out to expressed how our family would benefit from having a covered wagon rather than a traditional wheel chair. Juliette seizures are triggered by sunlight her ability to walk is limited. we have never been able to enjoy outdoor activities as a family. Our dream was granted. we couldn’t be happier! Lately our weekends have included the entire family out & able to watch our older kids sports & trips to the park this is a huge win for us. Dravet is a huge battle & having this wagon is a tool that helps us fight for a better quality of life, it allows Jules to stay cool in the shade w/ fan & extra cover creating a place to recover from seizures, escape triggers & have fun ! Thank you x’s a million from the Bauers’s family
The Dravet Syndrome Foundation was very very helpful to our family in providing and support information when our family member was first diagnosed with Dravet syndrome. Subsequently they have provided ongoing support through community events and a caregiver only support group. Their mission also includes supporting and funding basic research.
We feel so strongly about their mission that family has been fundraising since 2018 and we have raised over $1.3 million to date (see www.annaanddsf.org). In addition I joined the board in 2019.
We are a family with a teenage girl who has Dravet Syndrome. Our girl cannot do anything for herself, she is fully dependent. One of her favourite activities is to go out on the trail behind our house and be in nature. Her Wheelchair with her in it was getting very heavy and challenging to push on the trail. Draet Syndrome contributed to a new trail stroller for us that was made in France and is super light weight. We are super grateful and our girl being in it and going for long walks.
Dravet Syndrome Foundation, Inc. is not just your average foundation that supports you with educational and research updates. This foundation supports the family and the life of child diagnosis with Dravet in every aspect. Our family had to evacuate during Hurricane Ida with the potential hazards of losing power, weathering through the unknown severity of a category 4 hurricane, and limited essential resources available. These conditions placed our child with Dravet Syndrome at risk. We evacuated to Dallas where we could be close by a knowledgable children's hospital of her diagnosis, endless supplies for essential living, and staying together as a family. DSF provided an opportunity for additional assistance awarding a grant that supplied our family financial support while away from home. The financial support allowed us to fill our daughter's medication, maintain her diet restrictions, and supply her essential needs. Not only did DSF award us this grant, they also reached out personally to check on us. This foundation is like no other and these small gestures is what makes this lethal diagnosis so bearable by the ability to be supported no matter life's obstacles. DSF goes above and beyond being a non-profit organization and truly cares about each family that is in this for life. Thank you DSF for supporting our family!
I am not good at writing, but because of the Dravet Syndrome Foundation we were able to get connected with other Dravet families, to get useful information about new treatments. I am so thankful we have this Foundation. Thank you so much for everything you do!
I will never be able to explain how I made it through the journey of Dravet without mentioning the Dravet Syndrome Foundation. I have attended several of their virtual conferences and have personally benefitted from their Patient Assistance Grant.
The DSF Annual Conferences are TOP NOTCH. They have the best of the best speaking at these events. I can confidently say that if it weren't for my attendance at these conferences, there is no way I would be able to advocate properly for my child. These conferences have educated me about Dravet Syndrome and have helped my family navigate this difficult diagnosis.
The Dravet Syndrome Foundation has also helped us get adaptive equipment for our daughter. Our insurance denied helping us get a Cooling Vest for our DS daughter. She has breakthrough seizures when she gets too warm. Even 74 degrees! With a note from her doctor, DSF provided the cooling vest at no expense to our family. It came with perfect timing and we were able to use it while our family came to visit!
My son who recently turn 2 was diagnosed with DS on Nov 2020, he first seizure was at 4 months. He hardly could go out because of rising temperature, thank God because of this foundation I been able to learn more about the syndrome and how to help my son. Also, thanking the foundation for the financial help my son is getting less overheated and able to play around the house. I’m grateful for the wonderful foundation and helping us fight this syndrome with our children.
Pure exhaustion prompted me to ask for help. I received the SAMI monitoring system and two Big Mack communication buttons. I am a single parent it's very hard on me having to take care of everything by myself. I was hardly sleeping at night. My son co-slept with me the majority of the time because, otherwise I would get up a million times a night to make sure he's not suffocating. He has a tendency to roll on his stomach and that's usually when he has a seizure due to him suffocating. I had him lay with me to avoid all these problem s. But, he's almost 6 and I felt it's healthier to sleep in his own room. My son is also nonverbal and it would become frustrating because he couldn't tell me his wants and needs. Jaime from the Dravet Syndrome was so kind and helpful. I knew exactly what to send and to whom to send it to. I was treated with respect. The whole process was seamless and confidential. I am so grateful for the Dravet Foundation. Our quality of life has improved so much already!!
DSF is the very best. We copy them and learn from them every single day. So grateful for their leadership & example.
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.
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 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!
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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!
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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!
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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.
-Candice C.
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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
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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
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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!
Thank you,
Wendy Conte
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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.
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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.
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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!!!! :)
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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!
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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!
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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.
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.
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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!
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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.
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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 :~)
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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.
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