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  

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

Was this review helpful? 
Rating: 5 stars  

My son was diagnosed with Dravet Syndrome back in 2002, with genetic verification in 2003. Sadly, my son is one of the Dravet Angels, and passed away from Sudden Unexplained Death in Epilepsy (SUDEP) back in June of 2008. He was 8 years old when he passed away. While SUDEP was my son's primary cause of death, Dravet Syndrome is listed on his death certificate as his secondary cause of death. Over the years, I have had the privilege of knowing the co-founders of the Dravet Syndrome Foundation (DSF) personally before they started the DSF, and after my son passed, I wanted to give back to the DSF by volunteering at their annual fundraiser. The DSF raises much needed research funds, as well as monies allocated for cooling vests, seizure dogs, iPads, and other items needed by Dravet Syndrome families in need. I look forward to volunteering at DSF events for years to come!

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  

Our daughter Alexis was diagnosed with Dravet Syndrome in 2006. Until the Dravet Syndrome Foundation was formed there was no organization funding and directing research. The parents that formed DSF changed our lives. They gave us hope and a new purpose. We could continue to feel hopeless, or we could join their mission and help to change the future for our children. We have been fundraising for DSF for the past 3 years and it has brought so much optimism to our lives. We have great hope for Alexis, and all those that suffer with Dravet Syndrome. They have helped us feel part of a community that supports and cares for each other. The accomplishments of DSF are truely staggering. They have made enormous strides in funding and shaping the research, in increasing awareness, providing a support network for families and caregivers, and by supporting families in need with financial assistance. Hope gives us the strength to continue fighting this devastating seizure disorder.

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  

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.

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? 
1 previous review
Rating: 5 stars  

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!

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?

2011

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

My husband and I have been a part of Dravet Syndrome Foundation since the beginning stages of growth. We are beyond impressed with their strong leadership, passion and hard-working board members. DSF has worked hard in raising awareness and funds for our children “in hoping” to find a cure or even comfort in their lives. Our son was rewarded a stroller a few years ago, to receive such an amazing gift for our son was incredible. The board members never stop working and always go beyond to reach out to each family in need and even new families who are just finding out about the Dravet Syndrome world. DSF has an honest approach about what Dravet Syndrome is and always try to find a way to help families through their daily struggles. My husband and I are very proud to be an apart of such an amazing organization.

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  

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.

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

Life-changing

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

Likely

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  

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 :~)

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 am a volunteer for the Dravet Syndrome Foundation.  Since the first time I read their website I wanted to volunteer.  First because I was very impressed with how hard they work raising money for research.  That gives us as parents with a child with Dravet Syndrome, hope that our kids will have better treatments.  I am very impressed with how while raising the funds they also work very hard to support and help the Dravet comunity in a way only family would do it.  They also help families by providing assistive devices and services to children who otherwise wouldn't be able to afford.  I felt very welcomed since my first e-mail contact with them.  I am very proud to be a volunteer and I wished I had more time to be more involved with such a great Organization, very professionally ran and that makes sure that the funds go to the most promising research projects that one day may find a cure to this devastating 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?

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  

My son was diagnosed at 6months with Dravet. II went online and found the foundations website! As a rare syndrome while my son was having a prolonged seizure I was just reading which medications not to administer from the Dsf website. I was desperate and Lori., the president called me back after I sent her an email, she gave me hope with her words and the warning of this horrible syndrome! the foundation has been like a family through their support group. They share my hopes, laughter and cries! The staff is working hard on research and just pray one day there is a cute for this. DSF has just granted my son with a cooling vest and an IPad we use during his therapy. I am extremely grateful to the foundation and staff for working hard on research and although they face the same problems all dravet parents do, they make theirselves available to lend a crying shoulder and give support! I will always be thankful to DSF for all the work they do and trying so hard on finding a cure,

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?

2012

Was this review helpful? 
Rating: 5 stars  

I am a volunteer for the Dravet Syndrome Foundation. I am so impressed with the way this organization is run, and with their Board and staff. They give all of their time to help find a cure for this rare disease. I am happy to be a part of it in any way.

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?

2012

Was this review helpful?