Dravet Syndrome Foundation, Inc.

Rating: 4.98 stars   44 reviews

Issues:

Location: PO Box 16536 West Haven CT 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.
Write a Review

More Info

EIN 27-0924627
203-880-9456
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

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

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? 
Review from Guidestar
Rating: 5 stars  

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!

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? 
Review from Guidestar
Rating: 5 stars  

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!

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  

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!!

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  

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!

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? 
Review from Guidestar
Rating: 5 stars  

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.

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  

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.

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 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.

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?

2012

Was this review helpful? 
Rating: 5 stars  

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.

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?

Quite 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 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!

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?