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
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  

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

 
Flag review
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

 
Flag review
Rating: 5 stars  

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!!

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

 
Flag review
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!!!!!

 
Flag review
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.

 
Flag review
Review from Guidestar