Dravet Syndrome Foundation, Inc.

Rating: 4.98 stars   44 reviews

Issues: Health, Philanthropy

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.
2012 Top-Rated Nonprofit
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EIN 27-0924627
203-880-9456
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Community Reviews

Rating: 5 stars  

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

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 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!

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 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.

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?

2012

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Rating: 5 stars  

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!

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 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.

I've personally experienced the results of this organization in...

My son Jude, who has Dravet Syndrome, has been benefited by DSF because it has helped educate our family and friends about his condition. This has improved not only Jude's quality of life, but my husband's and mine as well.

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

I honestly cannot say I would make any changes, this foundation does an outstanding job.

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

I feel supported by the DSF. Having a child with Dravet Syndrome can be very isolating. Being part of the DSF family has given me hope because of the funding toward a cure, and a sense of community.

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

I wish I lived closer to the DSF headquarters so I could do more!!!!!

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Rating: 5 stars  

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've personally experienced the results of this organization in...

I have helped in getting items for the silent auction

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

get more people involved

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Rating: 5 stars  

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!!!

I've personally experienced the results of this organization in...

Assistance for a child with Dravet Syndrome.

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

None.

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

the hope we give to families that there will be better treatments and a cure! We have been contacted by many families who have joined us in our fundraising efforts and who appreciate that we are focusing our energies on funding syndrome-specific research that will help their loved ones. This is a devastating disease and we are proud to be raising hope through research.

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

We are striving every day to come up with better ideas for fundraising and raising additional research dollars through grants and sponsorships. There is nothing I would change about the organization at this time, except to encourage more people to volunteer and join us in changing the outcome of Dravet syndrome. We have come remarkably far in our short history, thanks to our many dedicated volunteers and our Scientific Advisory Board.

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