Dravet Syndrome Foundation, Inc.

Rating: 4.98 stars   44 reviews

Issues: Health, Philanthropy

Location: PO Box 16536 West Haven IL 06516 USA

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 $1M in Dravet-specific research grants, more than any other nonprofit organization. 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.

2012 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

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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Review from Guidestar
Role: General Member of the Public
Rating: 4 stars  

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.

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Rating: 5 stars  

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

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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 :)

If I had to make changes to this organization, I would...

None

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Review from Guidestar
1 previous review
Rating: 5 stars  

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!!!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

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


If I had to make changes to this organization, I would...

No changes needed at all!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Review from Guidestar
Rating: 5 stars  

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!

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Review from Guidestar
Rating: 5 stars  

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.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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!!!! :)

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Review from Guidestar