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Dravet Syndrome Foundation, Inc.

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Nonprofit Overview

Causes: Epilepsy, Health, Philanthropy, Public Foundations

Mission: The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.

Results: To date, DSF has awarded over $2M in Dravet-specific research grants, more than any other nonprofit organization, and over $80K in patient assistance grants. Even though research might not move as quickly as we as parents would like to see, we don't want lack of funding to be slowing down the process.

Target demographics: We collaborate globally with researchers, geneticists, clinicians, and other professionals with an interest in Dravet syndrome and related epilepies, as well as serving patients and familes across the globe.

Programs: •Research Grant Program – This program offers grants for research directly related to Dravet syndrome and associated epilepsies. Our research grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Research applications will be judged principally on novelty of the hypotheses, innovative approaches with a direct relevance and application to Dravet syndrome and related epilepsies, scientific quality, strength of approach, and likelihood of success. •International Ion Channel Epilepsy Patient Registry (IICEPR)– This registry (co-funded by the DSF & ICE Alliance) is owned by University of Michigan and Miami Children’s Hospital, but will be available to all interested researchers. It will collect basic information and genetic test results of individuals with Dravet syndrome and related epilepsies worldwide. The establishment of this registry will expedite future clinical trials and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution of any new information that may benefit patients and their families. •DSF Annual Research Roundtable – This annual meeting allows researchers, geneticists, neurologists and other professionals with a strong interest in Dravet syndrome and related epilepsies establish a “research roadmap”. By allowing this consortium of specialists to establish a plan, the DSF can facilitate the development and implementation of better treatments by funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace possible. •International Patient Assistance Grant (PAG) Program - This program offers grants to patients with Dravet syndrome and associated epilepsies for necessary medical expenses associated with these conditions that are not covered through private insurance or other assistance programs. Three percent of donations, after expenses, are allocated to this program.

Community Stories

22 Stories from Volunteers, Donors & Supporters

Hilary12

Client Served

Rating: 5

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!

Client Served

Rating: 5

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!

Previous Stories

Client Served

Rating: 5

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

Client Served

Rating: 5

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.

Review from Guidestar

Annabel H.

Client Served

Rating: 5

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

Previous Stories

Client Served

Rating: 5

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.

Karen91

Client Served

Rating: 5

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

Previous Stories

Client Served

Rating: 5

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!!!

Wendy79

Client Served

Rating: 5

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


Review from Guidestar

Client Served

Rating: 5

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

Client Served

Rating: 5

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

Tamara W.

Client Served

Rating: 5

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!

Becky37

Client Served

Rating: 5

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!!

gloverkarla

Client Served

Rating: 5

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

saben

Volunteer

Rating: 5

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.

Previous Stories

Client Served

Rating: 5

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

Akeia H.

Client Served

Rating: 5

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

Client Served

Rating: 5

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

Client Served

Rating: 5

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

Carolann M.

Client Served

Rating: 5

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!

Rebecca34

Client Served

Rating: 5

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.

Client Served

Rating: 5

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!

Paige F.

Client Served

Rating: 5

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!!!